Ask the Scholar

Document scope · 1 page
doc
Scholar
Ask about this object, its catalog metadata, its source description, or the page inventory. For page-specific OCR and visual context, open one of the page chats.

Scholar Source Context

Document identity
localId
365092574
label
Papers on Housing and Independent Living [1974-1978] [1]
core
doc
dtoType
document
pageCount
1
Source metadata
Source extras
naId
365092574
levelOfDescription
fileUnit
recordType
description
ocrSource
nara-archive
Single page context
seq
1
pageIndex
0
type
document
mediaId
9318e13f431e87b9
ocrText
Originally Processed With FOIA(s): FOIA Number: S S FOIA MARKER This is not a textual record. This is used as an administrative marker by the George Bush Presidential Library Staff. Record Group/Collection: Donated Historical Materials Collection/Office of Origin: Frieden, Lex, Collection Series: Printed Materials Subseries: Reference Materials OA/ID Number: 52144 Folder ID Number: 52144-003 Folder Title: Papers on Housing and Independent Living [1974-1978] [1] Stack: Row: Section: Shelf: Position: BIBLIOGRAPHY ON SUPPORTED LIVING CONDITIONS March 1978 compiled by: REHABILITATION INTERNATIONAL Information Service c/o STIFTUNG REHABILITATION Postfach 101 409 6900 Heidelberg 1 FEDERAL REPUBLIC OF GERMANY - 2 - Bibliographies 001 Fink, Ch. / Manus, M.R. Housing for the Disabled Persons: Annotated Bibliography Hofstra University, Dept. of Special Education and Rehabilitation - May 1975 prepared for and available from: United Cerebral Palsy Association, 66 East 34th Street, New York, N.Y. 10016, USA Physically Handicapped 002 : Apartment Building for Handicapped Persons (North Dakota, USA) Phys Ther, May 1974., 54:5:523 003 --- Berkeley Active in Rights for Handicapped Phys Ther, Apr. 1977, 57:4:437 004 --- Collective forms of living may be an alternative to institutions in: Beckman, M. - Building for Everyone, Stockholm 1976, pp. 103-105 005 --- Comunità famiglia Opicina Distrofia Muscolare, Feb. Apr. 1977, 16:53:4-5 006 Conference on housing and related support services for the physically handicapped crcd rehab dig, Aug. -Oct. 1975, 7:1:18 007 --- Housing and Home Services for the Disabled in the U.S. Rehab Gazette, 1972, 15 :6-12 - 3 - 008 Housing and Home Services for the Disabled in the U.S. Rehab Gazette, 1973, 16:38-45 009 --- Housing and Residential Services - Check List - Rehab Aust, Jan. 1976, 13:1:11 010 --- Die individuelle Betreuung Behinderter und Kranker durch Zivildienstleistende. - Merkblatt des Bundesministers für Arbeit und Sozialordnung - Rehab (Stuttg.), Mai 1977, 16:2:78-80 011 --- "Living together" plan succeeds Spastics News, Oct. 1977, 3-4 012 --- Manitoba Housing Kiwanis Centre of the Deaf no date Available from: Manitoba Housing and Renewal Corporation, 2100-185 Smith Street, Winnipeg, Manitoba R3C 3G4, Canada 013 --- Planned Cheshire in the U.S. Rehab Gazette, 1976, 19:31 014 --- Tax Deductions Allowed - IRS Attendant Ruling May Set Precedent Accent Living, winter 1975, 20:3:68-69 015 Baer, B. Bureaucratic Disincentives Rehab Gazette, 1976, 19:29-30 - 4 - 016 Bednar, M. Architecture for the Handicapped in Denmark, Sweden and Holland Publications Distribution Service, 615, East University, Ann Arbor, Michigan 48106, USA 1974 017 Berrol, S. The Berkeley Experience in Independent Living in: Abstracts, 13th World Congress of Rehabilitation International, Tel Aviv, Israel, June 13-18, 1976, p.15 018 Brattgard, s.-o. Integrated Living for the Severely Disabled Rehab World, Oct. 1975, 1:2:22-28, 32 019 Brattgard, s.-o. Varieties of Living for the Severely Disabled in: Abstracts, 13th World Congress of Rehabilitation International, Tel Aviv, Israel, June 13-18, 1976, p.20 020 Brattgard, s.-o. et al. Wohnung und Pflege für schwer Bewegungsbehinderte Rehab (Stuttg.), Nov. 1972, 11:4:223-233 021 Brohm, J. / Juster, K. (Bearb.) Die Wohnsituation der Körperbehinderten in der Bundesrepublik Deutschland Schriften "Bau und Wohnforschung" des Bundesministers für Raumordnung, Bauwesen und Städtebau, Heft Nr. 017 1976 022 Brown, R.G.A. Scotland's Thistle Foundation: A Traditional Sheltered Environment Rehab World, winter 1976/77, 2:4:30-32 023 Bryce, T. Housing for the Handicapped Rehab World, July 1975, 1:1:7-10, 28 - 5 - 024 California State Department of Public Health, Bureau of Chronic Diseases Residential Care Needs - A report to the California State Legislature; Handicapped Persons Pilot Project, Jan. 1969 Available from: Bureau of Chronic Diseases, 2151 Berkeley Way, Berkeley, California 94704, USA 025 Canadian Rehabilitation Council for the Disabled A National Conference on Housing and Essential Support Services for the Physically Disabled Edmonton, Alberta, Dec. 9-10, 1976 Canadian Rehabilitation Council for the Disabled, Suite 2110, One Yonge Street, Toronto, Ont. M5E 1E8, Canada 026 Cardall, E. San Diego's Plan for Self-Support Soc Rehab Rec; Mar. 1974, 1:3:12-16 027 Catterson, A. / Howell, S. Mental Health / Ottawa's Group Homes Project Can Ment Hlth, Mar. 1976, 24:1:42-44 028 Central Council for the Disabled Interim Report of the Working Party on Housing for Disabled People London, Dec. 1974 Available from: Royal Association for Disability and Rehabilitation, 25, Mortimer Street, London W1N 8AB, England 029 Chouinard, E. Family Homes for Adults Soc Rehab Rec, Feb. -Mar. 1975, 2:2:10-15 030 Coletti, E.J. Meeting Human Needs Thru Self Help A Visit to C.I.L. Center for Independent Living in Berkeley, California Am Rehab, May-June 1977, 2:5:19-25 - 6 - 031 Cook, C. Mainstreaming the Handicapped in: Abstracts, 13th World Congress of Rehabilitation International, Tel Aviv, Israel, June 13-18, 1976, p.32 032 Dickman, I.R. Help at the Door A Manual on Home Services for Individuals with Cerebral Palsy and Other Developmental Disabilities Dec. 1975 Available from: United Cerebral Palsy Associations, Inc. Professional Services Program Department 66 East 34th Street, New York, N.Y. 10016, USA 033 Dickman, I.R. Independent Living: New Goal for Disabled Persons (abstract: Rehab Lit, Sept. 1975, 36:9:292) Public Affairs Pamphlet No. 552, 28 pp. Available from: Public Affairs Committee, Inc., 381 Park Ave. South, New York, N.Y. 10016, USA 034 Dickman, I.R. No Place like Home Alternative Living Arrangements for Teenagers and Adults with Cerebral Palsy 1975 Available from: United Cerebral Palsy Associations, Inc., 66 East 34th Street, New York, N.Y. 10016, USA 035 Exner, G. Marburger Studentenwohnheim in: Jahrbuch der Deutschen Vereinigung für die Rehabilitation Behinderter e.V., 1969/70, S. 153-154 Available from: Deutsche Vereinigung für die Rehabilitation Behinderter e.V., Friedrich-Ebert-Anlage 9, D-6900 Heidelberg 1 036 Falta, P. Freedom to Live and "Integrated Living" in Action HABITAT, 1975, 6 - 7 - 037 Falta, P. / Cayonette, G. Social Chance through Integrated Housing - Resume of Final Report: Demonstrating project to implement "Integrated Housing" crcd rehab dig, Aug.-Oct. 1977, 8:4:4-6 038 Faughnan, P. The Dimensions of Need A Study of Members of the Irish Wheelchair Association (chap. 3: The Living Situation - Housing, pp. 24-33) Available from: Irish Wheelchair Association, Arus Chuchulain, Blackheath Drive, Clontarf, Dublin 3, Ireland 039 Frieden, L. Community and Residential Based Housing White House Conference on Handicapped Individuals, USA May 1976, unpublished 040 Gaylord, R. Communities for the Handicapped Built Environment Research Group, School of Environment, Polytechnic of Central London, London, England, 1974 041 Goldsmith, S. Designing for the Disabled (chap. 1.16: Housing alternatives to institutions, pp. 89-100 chap. 1. .17: Independent Housing, pp. 101-113) 3rd revised edition, London: RIBA Publ. Ltd. 1976 042 Goodwill Industries of America Proceedings of a National Conference on Housing and the Handicapped, Houston, Texas, Sept. 1974 Health and Education Resources, Inc., 9650 Rockville Pike, Bethesda, Maryland 20014, USA 043 Gray, R.C. Housing and Residential Accomodation Physiother, Aug. 1974, 60:8:239-243 - 8 - 044 Greenstein, D. / Gueli, C. et al. Housing for the Handicapped in Europe hud international, May 1976, Information Series 38, 045 Gries, J. Kap. 3.2. Wohnform in: Stemshorn, A. (Hrsg.) Bauen für Behinderte und Betaqte Stuttgart: Koch, 1974 S. 76-80 046 Holzman, J. Apartment Integration crcd rehab dig, fall 1976, 8:1:14 047 Hußlein, J. Gemeinschaftsanlage für Schwerkörperbehinderte Ein überregionales Modell entsteht in München (Pfennigparade e.V.) Rehab (Stuttg.), Febr. 1969, 8:1:36-39 048 Jeffrey, D. Highland Heights Fall River, Mass. in: Proceedings of a National Conference on Housing and the Handicapped, Houston, Texas, Sept. 10-12, 1974, pp. 21-22 ( for complete address see ref. no. 042) 049 Kendall, A.B. How Big is Too Big Rehab Gazette, 1976, 19:28-29 050 Klapwijk, A. "Het Dorp" - A Village for the Disabled in: Proceedings of the Eleventh World Congress of Rehabilitation International, Dublin, Ireland. Sept. 14-19, 1969, pp. 453-457 051 Kuldschun, H. Neue Wohnformen für alleinstehende Behinderte als Alternative zum Heimaufenthalt Innere Mission, 1972, 62:3/4 - 9 - 052 Kuldschun, H./ Rossmann, E. Planen und Bauen für Behinderte (Kap. 3.35: Sonderwohnformen, S. 57-61; Kap. 3.36: Offene Hilfen und Sozialzentren, S. 61-63) Stuttgart: Deutsche Verlags-Anstalt 1974 053 Kuldschun, H. Wohnungsbau für Körperbehinderte und alte Menschen als gesellschaftliche Rehabilitationshilfe Rehab (Stuttg. ) Aug. 1971, 10:3:160-173 054 Laurie, G. Housing / Independent Living: Housing and Home Services Rehab Gazette, 1976, 19:27-28 055 Laurie, G. Housing and Home Services for the Disabled Guidelines and Experiences in Independent Living New York: Harper and Row, 1977 056 Leonard, E. Disabled Housing in Scandinavia - Part I Performance, Oct. 1975, 26:4:6-9 057 Leonard, E. Disabled Housing in Holland - Part II Performance, Nov. Dec. 1975, 26:5/6:22-25 058 Lith, J. Experience Gained With Homes for Severely Disabled Unmarried Persons in: ISRD - Proceedings of the Tenth World Congress, Wiesbaden, Germany, Sept.11-17, 1966, pp. 46-47 - 10 - 059 Londahl, J. Utilizing Sec. 23 to Provide Housing for the Handicapped in Portland, Oregon in: Proceedings of a National Conference on Housing and the Handicapped, Houston, Texas, Sept. 10-12, 1974, pp. 26-27 (for complete address see ref.no. 042) 060 Loring, J. International patterns of resident care for the multihandicapped (abstract: Rehab Lit, May 1972, 33:5:152) crcd rehab dig, winter 1971/72, 3:3:11-14 061 Lufburrow, W. Independence Hall Houston, Texas in: Proceedings of a National Conference on Housing and the Handicapped, Houston, Texas, Sept. 10-12, 1974, p. 24 (for complete address see ref.no. 042) 062 Lummer, K. / Hartz, B. et al. (Hrsg. : VHS-Kurs 60113) Dokumentation: Wohnsituation Behinderter in Düsseldorf, no date Available from: The author, Schumannstr. 2 D-4000 Düsseldorf 063 Massachusetts Association of Paraplegics, Inc. Housing Needs of the Handicapped 1970 Available from: Massachusetts Association of Paraplegics, Inc. P.O. Box 48, Bedford, Mass. 01730, USA 064 McGuire Thompson, M. Housing and Handicapped People President's Committee on Employment of the Handicapped, Washington, D.C. 20210, USA, 1976 - 11 - 065 McGuire Thompson, M. / Noakes, E.H. Housing? Or Housing Options? Rehab Lit, Apr. 1977, 38:4:106-109 066 Nederlandse Centrale Vereniging ter Bevordering van de Revalidatie Beschermende Woonvormen Deelrapport 1 van het studierapport "De huisvesting van de minder-valide" s'Gravenhage, 1968 Available from: Netherland's Society for Rehabilitation, Postbus 9115, s'Gravenhage, The Netherlands 067 Netherland's Society for Rehabilitation Sheltered Living Conditions 1970 Available from: Netherland's Society for Rehabilitation. Postbus 9115, s'Gravenhage, The Netherlands 068 Pagano, N.A., Jr. Independent Living for Handicapped People: A Brooklyn Approach in: Proceedings of a National Conference on Housing and the Handicapped, Houston, Texas, Sept. 10-12, 1974, pp. 24-26 (For complete address see ref.no. 042) 069 Penton, J. / Barlow, A. Handbook of Housing for Disabled People Available from: Royal Association for Disability and Rehabilitation, 25 Mortimer Street, London W1N 8AB, England 070 Rice, D.M. Small Group Living Experiment on in San Diego paraplegia news, June 1975, 28:321:34 - 12 - 071 Saxer, G. Design for Living for the Handicapped with Severe Physical Disabilities and Lacking Any Special Advantages in: Proceedings of the Eleventh World Congress of Rehabilitation International, Dublin, Ireland, Sept. 14-19, 1969, pp. 74-77 072 Schiff, Y. Rehabilitation and Integration of Severely Handicapped Youth into the Community - An Alternative to Institutionalization in: Abstracts, 13th World Congress of Rehabilitation International, Tel Aviv, Israel, June 13-18, 1976, p. 176 073 Stiftung "Het Dorp" "Het Dorp" (brochure) Arnhem, no date Available from: Het Dorp, Heijenoordseweg 150, Arnhem, The Netherlands 074 Stohl, D.J. Preserving home life for the disabled (program developed by the Oklahoma Department of Institutions, Social and Rehabilitation Services) (abstract: Rehab Lit, Nov. 1972, 33:11:344) Am J Nursing, Sept. 1972, 72:9:1645-1650 075 Symons, J. Residential accomodation for disabled people (abstract: Rehab Lit, Sept. 1975, 36:9:290) May 1974 Available from: Center on Environment for the Handicapped, 24 Nutford Place, London W1H 6AN, England 076 Twichell, S. New Horizons Manor Fargo, North Dakota in: Proceedings of a National Conference on Housing and the Handicapped, Houston, Texas, Sept. 10-12,1974, pp. 23-24 (for complete address see ref.no. 042) - 13 - 077 U.S. Architectural and Transportation Barriers Compliance Board Freedom of Choice, - Report to the President and Congress on Housing Needs of Handicapped Individuals Vol. I and II, Washington, D.C., Oct. 1975 Available from: U.S. Architectural and Transportation Barriers Compliance Board, Washington, D.C. 20201, USA 078 U.S. Department of Housing and Urban Development Housing for the Physically Impaired A Guide for Planning and Design 1968 Available from: Superintendent of Documents, U.S. Government Printing Office, Washington, D.C. 20402, USA 079 Walther, V. Betreuung alleinstehender, unselbständiger Querschnittgelähmter durch Zivildienstleistende Rehab (Stuttg.), Mai 1977, 16:2:76-77 080 Williams, A.D. Housing (Design for Living Mexican Style: A new housing project in Guadalajara) Rehab Gazette, 1968, 11:72-73 - 14 - Mentally Handicapped 081 --- Housing for mentally handicapped people: the role of housing authorities design spec needs, May-Jul. 1977, 13:6-10 082 --- Modell einer differenzierten Wohnanlage Lebenshilfe, Juli/Sept. 1975, 14:3:157-163 083 --- Pennsylvania Plans 800 In Community Living Am Rehab, Nov. -Dec. 1976, 2:2:2 084 --- Das Wohnheim für geistig Behinderte - Empfehlungen zur Planung, Errichtung, Organisation und Führung eines Wohnheimes - Lebenshilfe, April/Juni 1970, 9:2:99-104 085 --- Wohnstätten für erwachsene geistig behinderte Menschen Grundsätze für Aufbau und Entwicklung Lebenshilfe, April/Juni 1975, 14:2:84-85 086 --- Ein zweites Zuhause für geistig behinderte Erwachsene behinderte kind (dbk), Juli 1975, 12:4:239-240 087 Ames, Th.R. / Levy, J.M. The hostel: plans and purposes J Rehab, May-June 1973, 9:3:28-30 - 15 - 088 Andrews, R.J. The mentally retarded: community provision and professional responsibility (abstract: Rehab Lit, Sept. 1972, 33:9:280) Aust J Ment Retard, Mar. 1972, 2:1:4-15 089 Anglin, B. To Nebraska With Thanks (facilities for MR semi independent living; ENCOR-Eastern Nebraska Community Office of Retardation) Ment Retard (Can), Apr. 1973, 23:2:2-9 090 Berkiansky, H.A. / Parker, R. Establishing a Group Home Ment Retard, Aug. 1977, 15:4:8-11 091 Berking, G. Die Wohnstättenarbeit in Braunschweig - Wohnen in kleinen Gruppen - Lebenshilfe, Jan./März 1977, 16:1:4-6 092 Birenbaum, A. / Seiffer, S. Resettling Retarded Adults in a Managed Community New York: Praeger, 1976 093 Black, B.J. Rehabilitative and Community Support for Mental Patients Rehab Lit, Feb. 1976, 37:2:34-40 094 Deutsch, I. A Transitional Approach to Community Residential Programming for Retarded Persons An Experience in Pennsylvania in: Abstracts, 13th World Congress of Rehabilitation International, Tel Aviv, Israel, June 13-18, 1976, p.46 095 Eder, K.R. Wohnstätten und Anstalten - Partner in der Hilfe für geistig Behinderte Lebenshilfe, Jan./März 1977, 16:1:12-16 - 16 - 096 Environmental Design Group Design Guidelines - Intermediate Care Facilities for the Mentally Retarded Department of Mental Health, Massachusetts, USA August 1976 Available from: Environmental Design Group, 14 Arrow Street, Cambridge, Mass. 02138, USA 097 Environmental Design Group Mental Health / Retardation Planning - community-based mental health services and facilities for mentally retarded Cambridge, Mass., no date Available from: Environmental Design Group, 14 Arrow Street, Cambridge, Mass. 02138, USA 098 Fanning, J.-W. A common sense approach to community living arrangements for the mentally retarded Springfield, Ill.: Thomas, 1975 099 Gladden, J. Sheltered Living Programs at the Lubbock State School in: Proceedings of a Conference on "Extended Living for the Mentally Retarded" Texas Tech. University, Nov. 12-15, 1972, p.31-40 Available from: Texas Tech. University, Research and Training Center in Mental Retardation, P.O. Box 4100, Lubbock, Texas 79409, USA 100 Granger, B.P. Developing Community-Based, Small-Group Living Programs in Rehabilitation Services Rehab Lit, June 1975, 36:6:170-174 101 Grunewald, K. Community Living for Mentally Retarded Adults Current Sweden, May 1977, no. 159 - 17 - 102 Grunewald, K. Group Homes - Options for Progress Ment Retard (Can), Apr. 1975, 25:2:15-18 103 Haak Organisations- und Entwicklungsplan für ein Wohnheim Lebenshilfe, April/Juni 1971, 10:2:105-109 104 Institute for Research into Mental and Multiple Handicap (IRMMH) - Library Information Service Group homes and community living arrangements for the mentally retarded adult; a select reading list London: IRMMH, 1975 105 Kinkaide, P.S.. Edmonton's Developing Continuum of Residential Resources Ment Retard (Can), Apr. 1977, 27:2:8-19 106 Lupke, K.v. Soziale Integration geistig Behinderter im Bereich des Wohnens - Gedanken zum Wohnstättenbau, zur Stadtgestaltung Gemeinwesenarbeit Lebenshilfe, Jan./März 1973, 12:1:1-7 107 McLaren, N. Apartment living in Brantford, Ont. Ment Retard (Can), Apr. 1977, 27:2:19-20 108 National Association for Retarded Citizens The Right to Choose Available from: N.A.R.C. Publication Dept., P.O. Box 6109, Arlington, Texas 70011, USA 109 Nooe, R.M. Toward Independent Living for the Mentally Retarded Soc Work, Jul. 1975, 20:4:286-290 - 18 - 110 Northern Virginia Association for Retarded Citizens (NVARC) Developing and Operating Group Homes for the Developmentally Disabled of Virginia Available from: NVARC, 105 E. Annandale Road, Suite 200A, Falls Church, Virginia 22046, USA 111 O'Connor, G. Home is a good place A national perspective of community residential facilities for developmentally disabled persons Washington, D.C., 1976 Available from: American Association of Mental Deficiency, 5201 Connecticut Ave., N.W., Washington, D.C. 20015, USA 112 Piltz, B. / Roach, C. Aspects of Rehabilitation of Mentally Retarded Residents in State-Sponsored, Community Facility Am Arch Rehab Ther, Sept. 1972, 20:3:77-84 113 Shapiro, H. Circle of Homes: group homes for the retarded in Cuyahoga Ment Retard, June 1973, 11:3:19-21 114 Shearer, A. No place like home? Hostels and homes for mentally handicapped adults Aust Citizen Limited, Aug. 1976, 147-161 115 de Silva, R.M. / Faflak, P. From Institution to Community Ment Retard, Dec. 1976, 14:6:25-28 116 Soforenko, A.Z. / Sommer, D.K. Connecticut Regional Mental Retardation Program in: Proceedings of a Conference on "Extended Living for the Mentally Retarded", Texas Tech. University, Nov. 12-15, 1972, p. 17-22 (for complete address see ref.no. 099) - 19 - 117 Soforenko, A.Z. / Sommer, D.K. Group Homes in Connecticut: Genesis and Program in: Proceedings of a Conference on "Extended Living for the Mentally Retarded", Texas Tech. University, Nov. 12-15, 1972, p. 23-30 (for complete address see ref.no. 099). 118 Thomas, J.K. An Overview of Washington State's Group Homes for Developmentally Disabled Persons in: Proceedings of a Conference on "Extended Living for the Mentally Retarded", Texas Tech. University, Nov. 12-15, 1972, p.5-11 (for complete address see ref.no. 099) 119 Tomlinson, P.B. / Cumming, J. Coast Foundation Apartment Project Can Ment Hlth, Mar. 1976, 24:1:23-28 120 Wagner, M.I. Community Living Centers Farmington, Michigan in: Proceedings of a National Conference on Housing and the Handicapped, Houston, Texas, Sept. 10-12, 1974, p. 27-28 (for complete address see ref.no. 042) - 20 - Narcotic Addicts 121 Carrick, R.W. Southmore House: Use of a "Halfway" House and Integrated Community Approaches in the Posthospital/ Correctional Institution Rehabilitation of Narcotic Addicts in: Rehabilitating the Narcotic Addict, Report of Institute of New Developments in the Rehabilitation of the Narcotic Addict, Fort Worth, Texas, Feb. 16-18, 1966, p. 219-224 Texas Christian University, Institute of New Developments in the Rehabilitation of the Narcotic Addict, Fort Worth, Texas 122 Geis, G. The East Los Angeles Halfway House: Two Years Later in: Rehabilitating the Narcotic Addict, Report of Institute on New Developments in the Rehabilitation of the Narcotic Addict, Fort Worth, Texas, Feb. 16-18, 1966, p. 231-237 123 Shelley, J.A. Daytop Lodge - A Two Year Report in: Rehabilitating the Narcotic Addict, Report of Institute on New Developments in the Rehabilitation of the Narcotic Addict, Fort Worth, Texas, Feb. 16-18, 1966, p.239-246 - 21 - Full titles of journals and publishers Accent Living = Accent on Living Cheever Publishing, Inc. P.O. Box 700 Gillum Road & High Drive Bloomington, Ill. 61701 Am Arch Rehab Ther = American Archives of Rehabili- tation Therapy The American Association for Rehabilitation Therapy, Inc. W. 32 Ferndale Road Paramus, N.J. 07652 Am J Nursing = American Journal of Nursing Am Rehab = American Rehabilitation (formerly: Social and Rehabili- tation Record) (official publication of the Rehabilitation Services Administration U.S. Department of Health, Education, and Welfare) Superintendent of Documents P.O. Box 1533 Washington, D.C. 20402 Aust Citizen Limited = Australian Citizen Limited (Journal of the Australian Association for the Mentally Retarded) Australian Citizen Limited P.O. Box 91 Brighton, South Australia 5048 - 22 - behinderte kind (dbk) = das behinderte kind (dbk) (Organ der Bundesarbeitsgemein- schaft "Hilfe für Behinderte" e.V.) Rehabilitationsverlag G.m.b.H. Kronprinzenstr. 67 D-5300 Bonn-Bad Godesberg Can Ment Hlth = Canada's Mental Health Department of Supply and Services, Publishing Centre Ottawa, Ontario K1 A059 crcd rehab dig = crcd rehabilitation digest Canadian Rehabilitation Council for the Disabled (crcd) Suite 2110 One Yonge Street Toronto, Ont. M5E 1E8 Current Sweden = Current Sweden Swedish Institute Box 7072 S-10382 Stockholm design spec needs = design for special needs Centre on Environment for the Handicapped 126 Albert Street London NW 1 7 NF distrofia muscolare = distrofia muscolare Direzione Nazionale Unione Italiana Lotta alla Distrofia Muscolare Via P.P. Vergerio 17 35100 Padova - 23 - hud international = hud international U.S. Department of Housing and Urban Development Washington, D.C. 20410 Innere Mission = Die Innere Mission Christlicher Zeitschriftenverlag D-1000 Berlin 41 J Rehab = Journal of Rehabilitation National Rehabilitation Association 1522 K St., N.W. Washington, D.C. 20005 Lebenshilfe = Lebenshilfe Bundesvereinigung "Lebenshilfe für geistig Behinderte e.V." Postfach 80 D-3550 Marburg 7 Ment Retard = Mental Retardation American Association on Mental Deficiency (AAMD) 5101 Wisconsin Ave., N.W. Washington, D.C. 20016 Ment Retard (Can) = mental retardation / déficience mentale Canadian Association for the Mentally Retarded Kinsmen National Institute on Mental Retardation Building York University 4700 Keele St. Downsview, Ont M3J 1P3 - 24 - 1 1. paraplegia news = paraplegia news Paralyzed Veterans of America, Inc. Editorial and Business Office 935 Coastline Drive Seal Beach, California 90740 Performance = Performance The President's Committee on the Employment of the Handicapped Washington, D.C. 20210 Phys Ther = Physical Therapy (Journal of the American Physical Therapy Association) Editorial Office 1156 15th St., N.W. Washington, D.C. 20005 Physiother = Physiotherapy (The Journal of the Chartered Society of Physiotherapy) 14 Bedford Row London WC1R 4ED Rehab (Stuttg.) = Die Rehabilitation Georg Thieme Verlag Herdweg 63 Postfach 732 D-7000 Stuttgart 1 Rehab Gazette = Rehabilitation Gazette International Journal and Information Service for the Disabled 4502 Maryland Avenue St. Louis, Missouri 63108, USA - 25 - Rehab Lit = Rehabilitation Literature National Easter Seal Society for Crippled Children and Adults 2023 W. Ogden Ave. Chicago, Ill. 60612 Rehab World = Rehabilitation World Rehabilitation International USA (RIUSA) Circulation Department 20 West 40th Street New York, N.Y. 10018 Soc Rehab Rec = The Social and Rehabilitation Record (now: American Rehabilitation) U.S. Department of Health, Education, and Welfare Social Rehabilitation Service P.O. Box 1533 Washington, D.C. 20402 Soc Work = Social Work (Journal of the National Association of Social Workers) National Association of Social Workers Publication and business offices 49 Sheridan Ave. Albany, N.Y. 12210 Spastics News = Spastics News The Spastics Society Advertising & Publications Dept. 12 Park Crescent, London W1N 4EQ List of references with relevance to the United Kingdom John Penton 1) Goldsmith, Sehoyn 'Designing for the Disabled'. 3rd Edition R.I.B.A. publications, London, 1976 (+ 20). 2) D.O.E./H.D.D. Occasional Paper 2/74 "Mobility Housing'. Department of the Environment, London, 1974. Free 3) D.O.E. Joint Circular 74/74 ' Housing for People who are Physically Handicapped! Her Majesty's Stationery Office, London, 1974, 6p. 4) D.O.E./H.D.D. Occasional Paper 2/75 'Wheelchair Housing'. Department of the Environment, London, 1975. Free 5) D.O.E. Joint Circular 92/75 'Wheelchair and Mobility Housing, Standards and Costs, Her Majesty's Stationery Office, London, 1975, 11p. 6) Chesire County Council Department of Architecture 'Made to Measure - Domestic Extensions and Adaptations for Handicapped Persons', Chester 1974, + 1.00 7) Rudinger, Edith, 'Coping with Disablement' Consumer's Association, 14 Buckingham St., London, 1974, + 2.00. 8) Fanon, Bernadette "So You're Paralyzed' Spinal Injuries Association, London, 1975 (+ 2.00) 9) D.O.E./D.H.S.S./W.O. Joint Consultation Paper 'Adaptations to Housing for People who are Physically Handicapped' Department of the Environment, London, February 1976. Free. 10) Penton, John, 'Handbook of Housing for Disabled People'. London Housing Consortium, West Group, London 1976. + 2.00. 11) English Tourist Board, 'Providing for Disabled Visitors', London, 1977, Free. 12) Foott, Sydney, 'Handicapped at Home", Design Council, London, 1977, + 1.85. 13) Penton, John, Architects Journal, London. 32p. following issues: Jan. 4, 1978 Design for elderly and handicapped people (*see attached copy) Jan. 29, 1975, Friendship House, Poole Oct. 23, 1975, Housing for the Disabled, Coventry 14) Penton, John, 'The Use of the Underground System by People with Impaired Mobility', London Transport, London, 1976. Free 15) Department of Urban Design & Regional Planning, Edinburgh University, 'Planning for Disabled People in the Urban Environment' Central Council for the Disabled, London 1969. + 2.00. - 16) National Building Agency, 'The Disabled in Rehabilitation Housing' Guidance for Housing Association, London, 1978. +1. Housing for Disabled Persons: Annotated Bibliography The Department of Special Education and Rehabilitation of Hofstra University Charlotte Fink, M.A. Muriel R. Manus, M.A. Gerald I. Manus, Ph.D. Prepared for: United Cerebral Palsy Associations, Inc. 66 East 34th Street New York, New York 10016 May, 1975 Ames, Thomas Robert and Levy, Joel. "The Hostel: Plans and Purposes." Journal of Rehabilitation, May-June 1973 Vol. 39, No. 3 p. 28-30. The authors feel that in order to obtain successful, rehabilitative work experiences a person needs adequate social interactions and only by living unassisted can you achieve this. A hostel could fill this need and some have been established for mentally retarded and brain injured individuals. some rooming features are described: dorm situations, shared apartments or singles -- various levels of unctioning can be serviced. Implications: The hostel idea is one of the newer independent living concepts. They are geared, to a great extent, to younger handicapped populations and provide community experiences within a therapeutic environment. They are located near some type of care facility and for this reason they are most suitable for the individual who may still need some medical attention. Bayes, K. and Franklin, S. "The therapeutic Environment." Designing for the Handicapped, London, 1971, p.18-25. from Mental Retardation Abstracts, Vol.9 The community for mentally retarded individuals described in this article pro- poses a complex of special facilities to supplement those used for living. These would include an educational facility, a work and a training program in the same environment as the housing arrangement, all vital to the therapeutic atmosphere. These would all be located in the community but would be near an institutution for use of its services and personnel. Implications: Aside from housing facilities an all-around living program is described where a great many needs can be met while maintaining the individual's independence. Rehabilitation can be accomplished within the community in the areas of emotional and social adjustment. Bjaanes, Anne and Butler, Edgar. "Environmental Variation in Community Care Facilities for Mentally Retarded Persons." American Journal of Mental Deficiency, January, 1974, Vol. 78, p. 429-439. from Psychological Abstracts. The authors examined the behavioral component of community living facilities for the mentally retarded and the development of independence in two specific types: the board and care facility and the home-care facility. (By board and care they were referring to renting group apartments with a hospital still legally responsible.) They found: a) board and care facilities were closer to normalization, b) more independent behavior resulted in board and care types, c) community exposure was a normalizing factor, and d) the development of inde- pendent functioning was related to geographic location of the facility and the type of staff available. Implications: This last component--geographic location and type of staff--was not actually described but could be an important factor to consider in seeking "normalizing" housing programs. Again, a facility in the community proved to further independence and social adjustment in former patients and even if some connections with an institution were necessary it is still a step out of residential care for this handicapped population. -1- Brattgard, Sven-Olof. "Integrated Living for the Severely Disabled." Models of Services for the Multi-Handicapped Adult. International Cerebral Palsy Society, 1973 Conference, New York City. The author established the Fokus Society in Sweden in 1964 in an effort to construct apartments and provide services for the severely disabled in apart- ment complexes built for the non-disabled population. Included in this article on living arrangements are sub-topics about medical treatment and training, basic apartment designs, systems of transportation, an analysis of financial expenses and the general adaptability of this type of housing project to other countries. Implications: The basic approach behind this model of service is that the severely disabled can, often do, and most certainly should be allowed to live in an integrated society. Moreover, "politicians, civil servants and special- ists must all be made to feel part of this type of planning. Brof, Per-Gunnar. "The Physical Environment and the Visually Impaired." ICTA Information Center, Bromma, Sweden. Published March, 1974. This article discusses a different handicapped population--the visually impaired--and their particular housing needs. It reports on a project carried out at the Swedish Institute for the Handicapped to determine types of facil- ities necessary in the total environment of the visually impaired. It describes important secondary features as well (library, shops, schools, etc.) Implications: This is one of the few articles discussing housing of the apart- ment complex type for the visually handicapped. It brings out their special needs and their implications for planning. Among these are emotional needs which could be filled in this independent housing program. * Brown, John. "Moving Into the Community." Reactions of a group of staff and emotionally disturbed children who moved from semi-institutionalized settings into ordinary houses in the community are explored. Problems in community and school acceptance, difficulties in adjustment to small group living, cooperation in household tasks, etc. are discussed. Feelings, attitudes and emotions of all involved parties are also examined very closely, taking into account the important consideration of psychological adjustment. Implications: This article does not study an actual apartment arrangement or architectural design for a house for the disabled. Instead it concerns itself with the emotional aspect of this living program and suggests further study into this area before any housing complex is organized. Bryant, Daniel C. "Designing for the Mentally Handicapped." Rehabilitation Literature. November, 1964, P. 331-332; 340. The designs described in this article were used in a Training Center for the mentally retarded but some features can be incorporated into apartments and private living facilities. A major point was to keep the environment uncom- plicated--it shouldn't be too distracting so that the person living there can give full concentration to the performance of necessary tasks. Implications: The focus here again, was on physical structures for a home for the handicapped rather than a description of an independent living program. However, the designer brought up an interesting consideration--on the necessity for a non- distracting environment. Before any complex can be organized the individual dwellings have to be built and for the mentally impaired, more than the physically disabled, this author's point should be kept in mind. *Abstracted from Exceptional Child Education Abstract -2- Chance, Arthur. "Hostels Within the Community." Teaching and Training, 8(4), p.102-108, 1970. Abstracted in Mental Retardation Abstracts. The author of this article feels the mentally retarded individual should have housing arrangements to administer to human needs of independence and self- reliance. Institutional care only gives basics for existence while a community residence furnishes a near normal family life and prepares for return to the "outside." Presently hostels have problems of acceptance by the community and financial support. Implications: This author again argues for the emotional and social benefits of an independent housing program for the mentally retarded. The hostel idea has been catching on and quite a few are now in existence. It seems that these group housing programs need more staff and services associated with an institu- tion when they are for the mentally handicapped, while modifications in environ- ment are necessary for the physically disabled population. *Coleman, Thomas and Hyman, Milton. "A Preliminary Study/Survey for Demonstra- tion Community Housing Programs for the Adult Mentally Retarded, Physically Handicapped and Mentally Ill." Wayne State University, Department of Special Education and Vocational Rehabilitation. A study was conducted for the Michigan State Housing Development Authority to gather background data necessary to initiate prototype community housing for mentally and physically handicapped independent adults. Three major areas were investigated: 1) legislation supporting construction of special facilities (funds, agencies, etc.), 2) architectural and transportation barriers involved in such a project; special services needed, etc. and 3) attitudes: community and the disabled population. The authors found that very little public sup- ported housing of this type existed, and if it did the facilities were often isolated and inadequate. Also, parents of the handicapped, citizens and the disabled themselves all support such community living arrangements. Implications: This was a very in-depth study of all major aspects of the independent housing for the disabled problem. The results are important for future planning: public agencies should be sought for financial and other assistance; these facilities should not be segregated or isolated and all types of community services should be available to the residents. Columbus, Dorothy and Fogel, Max. "Survey of Disabled Persons Reveals Housing Choices." Journal of Rehabilitation, March, April,1971,Vol.37,No.2,P.26-28. This report summarizes questionnaire results on housing requirements from a large sample of disabled persons living in Philadelphia, Pennsylvania. All were able to return to the community. The types of housing offered were: A: only physically disabled.B: mainly non-disabled but could accommodate a small number of disabled. C: mainly physically disabled with some non-disabled. D: physically disabled and elderly non-disabled. Results showed most preferred B, least preferred A. Implications: The authors concluded that disabled individuals preferred living in a "normal" environment, not a completely segregated (physically disabled population) residence. Taking a person's actual choice into consideration is the most important factor in providing a living arrangement for him and the recommendations in this article should set the guidelines for future planning. -3- Dickman, Irving R. "No Place Like Home". United Cerebral Palsy Associations, Inc.1975. This publication suggests that even the most severely disabled teenagers and young adults, given sufficient motivation, can move from parents' homes and insti- tutional placements into ordinary apartments and living units in the general com- munity, just like their non-handicapped peers. Implications: Rather than long-range "programs," let alone the building of special facilities, the way for an agency to help handicapped people to live inde- pendently may simply be to assist them to find apartments or houses on a unit-by- unit basis, and then to provide transportation, counseling and other back up services. There is also the indication that it is for the disabled individual and not his parents or professionals to decide whether and when he wants to risk living on his own: since independent living is not a "permanent placement," there is no overriding need to succeed, either for the handicapped person or his agency. Useful appendices deal with architectural and other adaptations, and with supportive services available through federal funding. Easton, Karl, M.D. "Some Psychodynamic Considerations in the Program Development of Boerum Hill: A Psychiatric Halfway House." Community Mental Health Journal, Winter 1974. Vol. 10, p. 395-401. One particular community setting for emotionally disturbed and mentally retarded former patients is discussed--Boerum Hill Home and Vocational Rehabilitation Institute. This is made up of a vocational training program, a facility for residential care and a satellite apartment complex. The first step out of resi- dential care is their halfway house. Next comes the "corrective living experi- ence" where independence in an emotionally healthy environment is stressed. The living arrangement is designed to reduce anxiety and provide physical com- fort to insure this goal of mental health. It is a fairly large establishment, the reason for this being a larger population in which to find friends, form sub-communities, engage in more group activities, etc. The community is self- governing, has a library, work facility and job placement office. Implications: This facility stressed mental comfort, because of the population it is dealing with, over physical modification of the environment. This is an often overlooked factor in planning a living program for the handicapped but should be included in the form of some psychological staff, social work or placement office available to the inhabitants. The point about a large facility is interesting and may also be considered as a planning suggestion. Fenton, Joseph. "Long Term Residential Facilities: The Unresolved Problem for Non-Retarded, Severely Disabled Adults." Rehabilitation Record, November, December, 1972, p. 4-7. The author conducted a survey in New York State to see what small-group facilities, other than institutional care, were available to disabled persons. There were none found at the time of this article. Many were in other states though, which had features of community activities, on-going rehabilitation, experience in independent living, etc. Implications: Based on this research, state sponsored facilities which fit the above description were proposed for moderately disabled individuals and a more supervised arrangement was suggested for the severely handicapped. -4- Fishman, Paul L. "Adaptive Housing for the Handicapped." Tufts-New England Medical Center, Social and Rehabilitation Services Grant #16P-56800/1-06, October, 1971. This report grew out of a study undertaken in August 1970 that suggested "differing modes of housing to be provided for those who need limited assistance (as) an alternative to nursing home care." Included in this report on "adaptive housing" (which the author believes is a more neutral term than "sheltered housing") are sections on identifying the handicapped and their housing problems, contemporary efforts to create barrier free hous- ing, developing adaptive housing within existing program, production of adaptive housing, institutional sponsorship of adaptive housing, barrier free design and required services, a proposal for adaptive housing, and their con- clusions, recommendations and uncertainties. The appendix includes function levels of different disciplines, sources of help for disabled at home, long term care facilities, the nature and effect of selected handicapping con- ditions, agencies serving the handicapped, effects of various housing sub- sidies on monthly rent and a bibliography for further information and materials. Implications: This report outlines in great detail the ramifications of adaptive housing for those persons who may be moderately or severely disabled. The strongest message that comes through in this report is that the housing problem facing the disabled is "everyone's concern but no one's responsibility." Ford, Chris W. "Better Living for the Disabled." Cerebral Palsy Review, January, February, 1965, Vol. 26. p. 14-16. This article describes several attempts to modify the environment and design new living arrangements for the handicapped to enhance independence and foster individual productivity. Home improvements (ramps, lifts, etc.) are described first. Then for those people desiring to live away from home a foster family program is discussed with an example of Rancho Los Amigos at Downey, California. This is called the "home coordination program" where three disabled girls hired three persons to help them while they still managed their own affairs. Finally, a more independent, more economical design of a community environment is presented. Several examples are given, among them Chesire Homes located throughout the United Kingdom where handicapped persons live independently in a small, emotionally therapeutic atmosphere. Many artists and writers have emerged from this community. Another such living program is the New Horizons Group associated with Memorial Hospital in Connecticut. Future programs are planned with a great deal of cultural and learning facilities as well as the actual housing facilities. Implications: Alternatives to residential care for the physically handicapped are discussed but the focus in these programs is on individual creativity and active usefulness of the inhabitants. A cultural atmosphere is included in the therapeutic quality of the setting, something to be considered in future apartment-group living programs. -5- Fritz, Margaret, Wolfensberger, Wolf, and Knowlton, Mel. "An Apartment living Plan to Promote Integration and Normalization of Mentally Retarded adults." Canadian Association for the Mentally Retarded, National Institute of Mental Retardation, York University, Downsview University, Downsview, Ontario, Canada, May 1971. This paper reviews the programs for residential services for retarded persons in Douglas County, Nebraska. It reviews the social integration effects of various residential living arrangements as well as the care-supervision impli- cations of each type of residential pattern. Portrayed throughout is a wide range of possible housing and residential arrangements, their financial and social costs and effects. An appendix is included which describes the admin- istrative and program details for developing these housing options. Implications: Provides clear exposition of the positive values of each type of housing option developed to meet the criterion of normalization for mentally retarded adults. Describes the financial and social consequences of tradi- tional versus normalizing residential patterns for retarded persons. Goodfellow, Robert A., Jr. "Group Homes-One Alternative." Center on Human Policy, Division of Special Education and Rehabilitation, Syracuse University, Syracuse, New York, 1974. This, the seventh in a series "Notes from the Center" reviews the experience in the Center in the creation of two group homes; one for children and one for adults. The problems and solutions developed in establishing these two homes are summarized or detailed in sections throughout this 38 page monograph. The topics covered include: "defining your constituency," "establishing a need," "locating or developing funding resources," "selection of a site," "meeting local resistance" and "establishing the home." Two appendices cover a sample budget and an outline for a group home proposal respectively. Implications: This pamphlet provides an excellent synopsis of reasons, the trials, tribulations and satisfactions in establishing group homes as one method in the normalization process for "retarded" children and adults. Goodwill Industries of America, September, 1974. "Proceedings of National Conference on Housing Handicapped." During this conference, 150 professionals representing both government and volunteer groups convened to examine the problems involved in Housing and the Handicapped. In addition to a close examination of the problems, a review of existing programs and planned programs was presented. Lastly, it was the purpose of this conference to help "develop a national program of action to provide community based housing responsive to the needs of the handicapped." Thus, included in this pamphlet are the remarks of many of the participants, an appendix listing the names and addresses of Conference Participants, a section of the Housing and Community Development Act of 1974 (Special Pro- visions for the Handicapped, Disabled and Elderly) and a brief description of Foreign Programs for the Handicapped. Implications: The purpose of this conference was to develop "the foundation for a permanent coalition of all interests working toward improvement of the environmental and living arrangements for the bandicapped and disabled." -6- "Handicapped, Disabled and Elderly-Public Housing." Report, Journal of Housing. August, September. 1971, No. 8, P. 417-419. Specific projects which authorized low-income housing for the disabled are described. They all recognize the need for congregate facilities as well as separate apartments. Also, most were located near some hospital or institution and residents received some sort of out-patient care. Several of these were: 1) in Syracuse-for the elderly, 2) in Columbus, Ohio next to the state mental hospital for its released patients, 3) Seattle Center for the Handicapped (orthopedically and neurologically impaired) and 4) Fall River, Massachusetts for physically handicapped receiving out patient care. Implications: The facilities described had several things in common but especially one--the services of the nearby hospitals were still very much needed. But the residences did give their population independence and experience in community living. It is a particularly good program when complete independence and self care cannot be achieved but some degree is desired. Hasselkus, Betty and Kiernat, Jean M. "Independent Living for the Elderly." American Journal of Occupational Therapy. May, 1973 Vol.27 P. 181-188. The program described here, in Madison Wisconsin, is a group living arrangement for the elderly where they plan their own budget, policies, etc. with some aid from the community. It is sponsored by the Neighborhood House of Madison, part of the Madison Neighborhood Centers. There are three components to this program: 1) adult education classes concerned with specific disabilities, 2) home consul- tation (to modify aspects of the environment as it becomes necessary) and 3) transportation (provided for by students at the nearby university.) Implications: The main feature of this particular program is the adult education aspect. This provides on-going advice and feedback to the individual about his disability and adapting successfully to his new environment. It is an all around therapeutic program--it provides independent housing, social therapy and educational awareness to its inhabitants in order to increase their level of functioning. Helsel, Elsie D. "Avenues of Action for Long Term Care of the Multiply Handicapped." Rehabilitation Literature. September 1965, Vol. xxvi, No. 9, p. 262-269. Some alternatives to institutional care for multiply handicapped individuals are examined: 1) Nursing homes--satisfactory but only where physical care alone is needed. Rehabilitation and independence are secondary. 2) Foster homes--this is a better way to integrate the handicapped person into society but there are many problems with placement and still, independence is not complete, 3) Regional Centers where workshops are the main focus and not the living arrangement, 4) Low-rent housing--becoming the trend now but the proposal which has the most practical problems: financing and staffing for long-term usage. Implications: Different housing alternatives are described to accommodate the disabled person and help him develop whatever potential for independence he may have. Very real problems are discussed for programs at all levels of small group living. The need for continuing financial backing and an experienced, on-call staff are the major drawbacks of the apartment arrangement, but agencies and solutions are suggested which could help this most independent residence succeed. -7- "Housing Needs of the Handicapped." A Study Conducted by the Massachusetts Association of Paraplegics, Inc. in cooperation with the Massachusetts Council of Organizations of the Handicapped. November 1970. This pamphlet presents the results of a survey, using a questionnaire, under- taken in 1965-66 of 250 members of the Massachusetts Association of Paraplegics. On the basis of this sample, the following conclusions and recommendations were made: 1) More adequate housing was needed by 50% of the handicapped persons and that given this new adequate housing, 68% would move; 2) apartment units should be constructed in each area of Massachusetts to meet needs of handicapped persons; 3) renovated housing should consider the needs of the handicapped; 4) incentives should be provided to private contractors to build single and multiple family dwellings that are accessible and usable by handi- capped persons; 5) establishment of a housing council of legislators, rehab- ilitationists, housing and urban specialists and architects. This council should develop priorities and centralized information on housing for the handicapped. Implications: The report presents in table form, payment limits for specialized housing, type of housing units required, ranking of required design features, ranking of required services and tenant population derived from the population who were surveyed. Jeffrey, Dorothy. "A Living Environment for the Physically Disabled." Rehabilitation Literature. April 1973, Vol. 34, No. 4, p.98-103. Three apartments designed with features for the physically handicapped are described: 1) Center Park in Seattle, Washington. 2) Highland Heights, in Fall River, Massachusetts. 3) New Horizons Manor in Fargo, North Dakota. They all have HUD support and are managed by local housing authorities. The "village concept" is also described--a complete living environment for single disability groups. Implications: These projects all strive to provide the individual with inde- pendent living experiences and support according to his needs. A full time staff is not necessary and the buildings are not always near hospitals. But, disabilities are grouped together which might be one drawback of such a program. A disabled person should be exposed to a great deal of community involvement and an integrated housing arrangement could offer a more all-around therapeutic environment. Klein, Leon. "The Hospital Halfway House." Mental Hygiene, Summer, 1972, Vol. 56 p.30-33. Several pre-requisites for a transitional community-located facility to foster independence and prepare for self-sufficiency in a population of former mental hospital patients are listed. These include a good administrative and pro- fessional staff, individual counseling, a home-making program and some work facility located in the community. This housing project would be physically owned by the hospital but operated by the inhabitants "non-medically." Implications: This is another design for a semi-independent housing facility for the mentally handicapped again stressing some sort of counseling service as part of the total environment. It is associated with a hospital but provides a different kind of "treatment" for its inhabitants--it allows them to adjust emotionally and socially to the outside community before complete discharge into that community. -8- Klein, Stanley and Abrams, Susan. "Public Housing for Handicapped Persons?" Journal of Rehabilitation. March, April 1971 Vol. 37, No. 2 p. 20-21. The authors of this article take the stand that integrated housing would be beneficial to handicapped and non-handicapped individuals alike. Their reasons are: 1) living environments can be easily adapted, 2) medical atten- tion is not necessary for many disabled persons and 3) money does not have to be a problem--the inhabitants would have to be working and able to contribute a portion of the rent. Three such settings are discussed: Fall River, Massachusetts--elderly integrated with handicapped, located on Municipal Hospital grounds. Baltimore--funds have run out but originally the Baltimore Urban Renewal and Housing Association sponsored it. Detroit--elderly and younger residents are integrated. The United Fund partially supports it. Implications: These three examples illustrate the fact that an integrated housing approach can work. A major problem is funding but the philosophy of having disabled persons working, living and contributing to the community is valid. Luckman, Irwin. "House for a Paraplegic Veteran." Progressive Archetecture April, 1953 p. 89-91. The orientation of this architect is to design to the strengths, "seek out and exploit those abilities a person still possesses." His goals are maximum performance, maximum therapy, maximum pleasure. Therapeutic devices are incidentally worked into the environment. Implications: This article offers the most positive philosophy in designing houses for the handicapped. Unlike most other constructions with ramps, wider doors, etc. this designer builds in parallel bars, overhead bars, a special bathroom-bedroom lifting device--all continuations of the type of therapy measures a person would receive in rehabilitation training, focusing on his strengths. May, Elizabeth, Waggoner, Neva R. and Hotte, Eleanor B. "Independent Living for the Handicapped and the Elderly." Houghton Mifflin Company, 1974, p. 271, Boston, Massachusetts. This 13 chapter book focuses on the "how to" approach in moving from depen- dency to independent living. The authors devote 3 chapters to the design and adaptation of clothing, 2 chapters to homemaking skills, 2 chapters to child care, 1 chapter on how to play with children despite physical disabilities, other chapters on planning and adapting the home to save energy and time and 2 general philosophical chapters summarize the emphasis on independent functioning despite age or physical limitations. The book presents material gathered from "nearly 300 programs on independént living in the United States, Canada and 10 foreign countries." Along with mumerous pictures and illustra- tions, the book offers 8 appendices of commercial and non-commercial sources for adaptive devices, periodicals published by and for the handicapped, agencies providing services to the handicapped and a bibliography for further information on areas covered in the book. Implications: This is one of the most complete handbooks on helping the handi- capped to become independent. -9- *Muller, Henrik. "Well Planned Town Centers--A Contemporary Demand of the Handicapped." ICTA Information Center, Bromma, Sweden The needs of handicapped persons in terms of structure of the whole physical environment are discussed. Recommendations are made for small to medium sized agglommerations in rural areas, with provisions for housing, work, services (schools, library, shops, church, etc.), transportation and open- air facilities. Implications: The model village described offers a very compact, complete independent living arrangement for the handicapped. All possible needs are attended to and serviced, however the segregated nature of such a facility might have a detrimental effect psychologically and this problem was not explored in the article. O'Connor, Gail and Sitker, George. "The Study of a New Frontier in Community Services: Residential Facilities for Developmentally Disabled Persons." Working Paper, Oregon University; Rehabilitation Research and Training Center in Mental Retardation, December, 1973. This is the first part of a survey of community group facilities for the adult mentally retarded focusing on types of facilities, referral sources, develop- ment of the program, population and problems. The authors have found many such designs for living are associated with institutions or sheltered work- shops (the source of referral;) others had private funding and obtaining the proper staff and money were major problems. The second half of the study deals with actual styles of resident life, interrelationships in these communities and reaction of the general community. Implications: Instead of describing one particular program of independent living the authors studied the general characteristics of these programs, and problems, and will continue to study their actual workings. These studies are necessary and provide valuable data on which to base a housing program for the handicapped. "Operating Manual for Residential Services Personnel." Nisonger Center for Mental Retardation and Developmental Disabilities, Ohio State University, Columbus, Ohio 1974. Divided into 32 chapters in 10 sections, this publication serves as a guide to assumptions, establishment and operation of a group home for develop- mentally disabled persons. The manual provides a detailed coverage of such topics as personnel, development of the residents, medical-nutritional aspects, legal factors, and emergencies. Implications: This manual can serve as an excellent guide for all staff responsible for the management of group homes or hostels. It would be useful to advisory groups responsible for the planning and developing of community housing for disabled persons. -10- Perske, R. and Marquiss, J. "Learning to Live in an Apartment." Mental Retardation. October, 1973, Vol. II, No. 5, p. 18-19 A project in Omaha was described where 18 men and women became live-in friends to 30 mentally retarded, working adults. They helped these people make the transition to community living and taught such skills as shopping, money management, mass transit, etc. The program was backed by the Eastern Nebraska Community Office for Retardation (ENCOR) and the Greater Omaha Association for Retarded Children. Implications: This apartment living project approached a very real problem-- helping the handicapped individual "cope" with society in practical terms. Since much of this population came from an institution-type setting, they had to actually be taught leisure activities--they were going from programmed days to independence and this factor has to be taken into consideration in planning staff and activities for any community living arrangement. Psomopoulos, Panayiotis. "The Quality of Life for the Handicapped." Models of Service for the Multi-Handicapped Adult. International Cerebral Palsy Society, 1973 Conference. The author turns his attention to the problems of the disabled as they try to cope with a physical environment that grows more and more complex. As an architect and city planner in Greece, he defines the term "handicapped" and then goes on to define "human settlements." An interesting aspect of the article is the author's belief that "at some period in his life everyone has experience of operating as a disabled person." Using this criterion, he suggests that at any given time 50% of the population are disabled; the author believes that "the quality of life in today's urban settlements is poor for both disabled and able." Implications: We have a long way to go toward improving human settlements and what may be needed first is a general change in our attitudes and a change in our priorities, to permit human settlements to be "built for the comfort and safety of all its members." Ragan, Charlotte E. "Retarded Adults in Foster Homes." Rehabilitation Record, September, October, 1971, Vol. 12, p. 37-39. In this program mentally retarded adults in Missouri are placed into private foster homes in a community project known as Sikeston-Delmo. The families who participate receive public funds and provide a family atmosphere and an independent living experience in return. An activity center is located for the handicapped inhabitants along with speech therapy classes, other special classes and a counseling center. They have freedom to move around and live within the community with other handicapped individuals as well. Implications: This program appears to simply provide homes for the mentally retarded who do not have families of their own to live with. However, it goes a step further by establishing an entire community to house these individuals in a therapeutic and learning environment and allowing them independent experiences in this community. -11- Richmond, Charles. "Therapeutic Housing." Rehabilitation Record. November, December, 1972, p. 8-13 Halfway houses for the mentally ill and socially maladjusted were discussed. A supervised group living experience as a step towards independent involve- ment in the community is the philosophy behind this program. A "sub-society" is the idea. The use of the group is therapeutic and important to the rehabilitation of the residents. One in San Mateo County, California, El Camino House, is described. Management is accomplished with the help of the residents. The next step out is extra-miral housing where small groups live without staff. The Satellite Housing program in the same county is an example of this with graduates of El Camino. Implications: Halfway houses, with their protective re-creation of the out- side have been in existence for some time. They offer a good first step into the community for disabled people who still need supervision in some areas. The extension of the program to a more independent design contimues the progress the residents had made and allows them to develop their maximum potentials. It can be included as part of the rehabilitation process of mental institu- tions or training centers as an out-patient kind of therapeutic measure. Robb, J. "Buildings for the Handicapped and/or Aged." The Bulletin of the American Institute of Architects. January, 1952, p. 1-18. The article describes an architectural design for apartments for the aged, mainly. The goal is independent, congregate living. Some features are one level dwellings, more heating, several safety measures and not too many corners or details. It is an alternative living arrangement to institutional care. Implications: Although the houses described were designed mostly for the elderly, they can be adapted to fit the needs of a disabled population. A housing complex which uses certain architectural designs to facilitate day-to-day living is the first step towards implementation of a new, independent residen- tial program. Shapiro, Helen. "Circle of Homes-Group homes for the Retarded in Cuyahoga County.' Mental Retardation June 1973, Vol. 11, No. 3 p. 19-21 "Circle of Homes" is a housing community for adult retardates co-functioning with training centers. Their premise is "work in the community, live there." The first one opened May 5th, 1971, has a large professional staff available but most of all, gives an independent living experience to the retarded adult. Implications: This residence plan is based on the rationale that group homes are part of the continuum of services for the retarded. This is an important consideration--if an individual can work in the community then he should be able to live independently in this same community. In fact, the transition and adjustment should be easier for him. The necessity for a multi-faceted therapeutic environment is illustrated by this point. -12- Stein, Edna and Sorenson, Karl. "A Cooperative Apartment for Transitional Patients." Mental Hygiene, Winter 1972, p. 68-74. A model living program for female patients discharged from Metropolitan State Hospital in Massachusetts is described. The Brookline Association for the Mentally Handicapped is the agency responsible for this residence which started in 1963. Four individuals live in this apartment at one time-- there have been many groups of four since the beginning because of the temporary nature of the program. The inhabitants work, live in the community and are completely self-sufficient. The only contact they maintain with the hospital is in the form of meetings once a week with a social worker to discuss problems, activities, issues that may arise, etc. The long term results of this independent living facility are good except for one undesirable feature-- the constant changing of inhabitants and living with people in crisis. This is a temporary, semi-supervised environment simulating a community experience. A similar one for men was opened in 1970. Implications: Again, it appears any independent housing facility for the mentally handicapped population still maintains some services of the former hospital and has to deal mainly with problems of emotional adjustment. The point regarding the rapid turnover of inhabitants and the unstable nature they bring to this arrangement should be considered in planning for related services or a volunteer staff in such a program. Wolfensberger, Wolf. "The Principle of Normalization in Human Services." National Institute on Mental Retardation, Toronto, Canada, 1972, 255 pages. Chapter 6 (Architectural-Environmental Implications) Chapter 7 (Implications of the Normalization Process to Residential Services) In the first of these two chapters, the principle of normalization is applied to institutional buildings (Chapter 6) with special attention to the architect's task of responsibility. In the second of these chapters (Chapter 7) the normalization principle is framed around a series of 6 implications (integration, smallness, separation, the domicilary func- tion, specialization and continuity.) The chapter then covers recommended procedures for economical residential patterns that maximize the normal- ization process. Implications: Particularly relevant to residential planning and advisory groups as well as architects and student-architects, these two chapters provide clear caveats. These warnings, if observed diligently, can improve the opportunity for disabled persons to avoid the secondary disability resulting from evasion of their normalization needs. -13- United States Department of Health, Education & Welfare, Social & Rehabilitation Service. Community Services Administration, Housing Report No. 1, 1970. "Toward Housing & Community Improvement." This is a 25 page pamphlet containing data on "the role of public welfare in housing." Most of the tables included in this booklet derive their information from a questionnaire circulated by the Department of Health, Education & Welfare to all State Departments of Public Welfare. The purpose (for the collection of this data) was to stimulate "government action toward housing and community improvement in accordance with the recommendations of the HEW Housing Report." Implications: The main theme discussed in this pamphlet is that "major shortcomings of housing for public assistance recipients" be overcome to help all people, regardless of their socio-economic status, to own his own home or to help him or her meet minimum standards of living that are in keeping with the surrounding community. United States Department of Housing and Urban Development, United States Printing Office, Washington, D.C., June 1971. "The Built Environ- ment for the Elderly and the Handicapped: A Bibliography." This 42 item bibliography covers ten broad areas in an effort to "persuade planners and architects to consider the physical building, (and) its site in relationship to other segments of the population. Some of the sub-areas included are the aging process, foreign experience, architecture and space use, senior centers and the handicapped. Implications: Using these references, planners and architects who are responsible for housing can broaden their plans to include the recent information and guides to "the built environment" for the elderly and/or handicapped persons. -14- ADDITIONAL REFERENCES "A Brief Checklist of Recent Publications Relating to Architectural Planning for the Physically Handicapped." Revised April, 1970. Chicago: National Easter Seal Society for Crippled Children and Adults. "Access for the Disabled to Buildings, Part 1, General Recommendations," British Standard Code of Practise, CP-96: 1967, British Standards Institution, London. "A Decent Home. Report of the President's Committee on Urban Housing, Washington: Government Printing Office, 1969 "American Standard Specifications for Making Buildings and Facilities Accessible to, and Usable by, the Physically Handicapped" A117-1961, The American Standards Association, New York, 11 pages. "Architectural Barriers Legislation for Aiding the Handicapped from the Code of the City of Rochester, New York." Spencerport, New York: General Code Publishers Corporation, City of Rochester, New York, 1967. "Beltsville Energy-Saving Kitchen, Design 2," Leaflet No. 463, April, 1961, and Design 3, Leaflet No. 518, February, 1963, U.S. Department of Agriculture, Government Printing Office, Washington, D.C. Chatelain, L. "Architectural Barriers--A Blueprint for Action," National Easter Seal Society for Crippled Children & Adults, Chicago, Illinois Chatelain, L. Rehabilitation Record, Vocational Rehabilitation Administration, Washington, D.C. "More Accessibility for the Handicapped." November, December, 1965 "Child Care Equipment for Physically Handicapped Mothers," Storrs: The School of Home Economics, University of Connecticut, 1961. "Conferences: The Physically Disabled and Their Environment, "Stockholm, October 12-18, 1961. Report of the Proceedings. Sweden: Stockholm Stads Arbetsvardsbyra, 1962. Distributed in the United States by ISRD, New York. Dantona, R., and Tessler, B., Rehabilitation Literature, "Architectural Barriers for the Handicapped; a Survey of the Law in the United States," National Easter Seal Society for Crippled Children and Adults. Chicago, Illinois "Design for All Americans." A Report of the National Commission on Architectural Barriers to Rehabilitation of the Handicapped. United States Department of Health, Education and Welfare, Government Printing Office, 1967. -15- "Design of Facilities for the Mentally Retarded: Diagnosis and Evaluation, Educational and Training Living Units," United States Public Health Service, Division of Hospital and Medical Facilities, Washington, D.C., 1966, 46 pages. "Design for the Disabled Helps the Able," "Designing for the Disabled: Design Details," Birmingham, Alabama, City Architect's Department, Official Architecture and Planning, May 1968, p. 647-649. "Equipment for the Disabled: An Index of Equipment, Aids and ideas for the Disabled." Margaret Agerholm, Medical Editor, 1966. 4 Vols. (Revised and Enlarged) National Fund For Research Into Crippling Diseases, Vincent Houst, London, S.W. 1, England. Available in United States from Interna- tional Society for Rehabilitation of the Disabled, New York, New York "Fokus: A Way to Form a Future." Fokus Society--Housing and Work for the Disabled. Goteborg: The Fokus Society. Vastra Hamngatan 24-26, 41117 Goteborg, Sweden. Goldsmith, Selwyn, "Designing for the Disabled"--2nd Edition. A Manual of Tech- nical Information. Royal Institute of British Architects, London, 1967 (207 pages). Goldsmith, Selwyn, "Housing for the Disabled." Official Planning and Architecture, May 1968. p. 635-640. Gutman, Carolyn, Thomas, Charles E., "Wheelchair to Independence: Architec- tural Barriers Eliminated." Springfield, Illinois, 1968, 136 pages. Hamngatan, Vastra 24-26, S411, 17 Goteborg, Sweden, December 1969, "Principles of the FOKUS Housing Units for the Severely Disabled." Hampden, RobbJ., AIA, "Houses for the Handicapped," American Institute of Architects Bulletin, January, 1952, pp. 15-17. Hilleary, James F., "Buildings for ALL to Use." AIA Journal, March 1969. This article includes "An Annotated Bibliography on Barrier-Free Architecture," Reprints from: University Microfilms, Inc., Ann Arbor, Michigan. Holzworth, Karl B., "Restroom Provides for the Handicapped," Park Maintenance January, 1970, p.8-9. Available from Park Maintenance, P.O. Box 409, Appleton, Wisconsin. "Helping all the Handicapped." Massachusetts Vocational Rehabilitation Planning Commission, Boston, 1968. -16- "Housing for the Disabled." Netherlands, 1966. Available from International Society for Rehabilitation of the Disabled. New York, New York. "Housing Needs of the Handicapped." Massachusetts Association of Paraplegics, Research Division. Study conducted in cooperation with Massachusetts Council of Organizations of the Handicapped under contract from the Massachusetts Rehabilitation Commission. November, 1970. "Housing for the Elderly," with Special Consideration for the Handicapped. United States Department of Housing and Urban Development, Federal Housing Administration. Washington: Government Printing Office, 1967. "Housing for Disabled Ex-Servicemen," Architectural Review, Vol. III, p. 51-52, January 1952, Illustrated. "Housing for the Disabled: Notes on Design," Official Architecture and Planning, Ed., May 1968, p. 644-646. Johnson, Ralph J., "Buildings for the Handicapped and/or Aged, "American Institute of Architects Bulletin, November, 1951, p. 2-9. Judson, Julia S., M.S., APTA: Wagner, Elizabeth, ORT: and Zimmerman, Muriel E.,B.S., ORT, "Homemaking and Housing for the Disabled in the United States of America," Rehabilitation, N.Y.U. Medical Center, 1962. Kettunen, Ruth, "Take It Easy." (A Series of four pamphlets developed in cooperation with the Michigan Heart Association dealing with work simplification in ironing and in kitchen and household storage.) East Lansing: Cooperative Extension Service, College of Home Economics, Michigan State University. Kira, Alexander, Associate Professor of Architecture, "The Bathroom Criteria for Design," Cornell University, Center for Housing and Environmental Studies, Ithaca, New York, 1966. Lowman, Edward W., and Klinger, Lannefeld, Judith. "Aids to Independent Living: Self Help for the Handicapped." 1969. Blakiston Division, McGraw Hill Book Co., New York, New York. May, Elizabeth Eckhardt; Waggoner, Neva R, and Boettke, Eleanor M., "Homemaking for the Handicapped, 1966. Dodd, Mead & Company, New York May, Elizabeth Eckhardt; Waggoner, Neva R, and Aho, Sylvia, M. "Work Simplification in Child Care for the Rehabilitation of Handicapped Homemakers." Storrs: School of Economics, University of Connecticut, November, 1963, revised May 6, 1964. -17- McCullough, Helen E. and Farnham, Mary B. "Space and Design Requirements for Wheelchair Kitchens," Bulletin 661. Urban: University of Illinois, Agricultural Experiment Station, June 1960. McCullough, Helen E. and Farnham, Mary B., "Kitchens for Women in Wheelchairs," Circular 841. Urbana: University of Illinois, College of Agriculture Extension Service and Home Economics, 1961. McGuire, Marie C. "Church and Non-Profit Sponsored Housing--A Note for Low- Income Families." Portion of remarks at 52nd Annual Meeting of National Conference of Catholic Charities. October 11, 1966, New Orleans, Louisiana. McGuire, Marie C. "Housing for the Handicapped." Presented At Conference on Building a Barrier-Free Environment. Columbia, Maryland, April 29, 1971. McNab, Archie. "Designing for the Elderly: Environmental Needs." Official Architecture and Planning. May, 1968. p. 641-643. Nugent, Timothy, "Design of Buildings to Permit their Use by the Physically Handicapped," National Easter Seal Society for Crippled Children and Adults, Chicago. Nugent, T.J. "A Challenge-New Concepts in Living." Proceedings of the National Institute of Making Buildings and Facilities Accessible to and Usable by the Physically Handicapped. Chicago: National Easter Seal Society for Crippled Children and Adults, November, 1965. "Open Passage for the Handicapped," Progressive Architecture, Vol. 42, p. 148-151, December, 1961, Illustrated. Pastalan, Leon A., and Moyer, L. Noel, "Vistula Manor Demonstration Housing for the Physically Disabled.' Fina1 report, April 20, 1969. Toledo, Ohio Research Foundation, University of Toledo, Ohio 43606 "Planning for the Handicapped." House for a Paraplegic, Progressive Architecture, Oakland, California, April 1953, Vol. 34, p. 89-91. Poulter, R.G. "Dwellings for the Disabled." Journal of the Institute of Housing, Vol. XXXVI, No. 4, March 1965, p. 189-192. "Readings in Homemaker Service: Selected Papers Presenting the Background, Uses and Practices or Homemaker-Home Health Aide Programs." National Council for Homemaker Services, New York 1969. Rehabilitation Gazette: "Housing and Home Services for the Disabled in the United States." Vol. XVI 1973, p. 38-45. "Rehabilitation of the Physically Handicapped in Homemaking Activities" (plus bibliography.) Proceedings of a Workshop, Highland Park, Illinois, January 27-30, 1963. Washington, D.C.: Department of Health, Education and Welfare, Government Printing Office. -18- "Self Help Devices for Rehabilitation," (Sixth report deals with bathrooms, household equipment.) New York: New York University, Bellevue Medical Center. Tesone, S. L. "Housing for the Physically Impaired: A Guide for Planning and Design." United States Department of Housing & Urban Development, Washington, 1968. "The Real Man," AIA Task Force on Architectural Barriers; a Looseleaf Publication containing measured drawings of wheelchair, parking lots, doorways, showers, telephones, restrooms, etc., all designed for use by the handicapped. Washington. "The Right to Choose." Achieving Residential Alternatives in the Community. National Association for Retarded Citizens. October, 1973. Wallis, H.F., "Housing for the Disabled." Local Government Chronicle, October, 1970. p. 1250-1252 plus. Warren, Earl. Legal Institute. "Handbook on Housing Law. Vol.1. Guide to Federal Housing, Redevelopment and Planning Programs." Berkely: University of California, 1970 "Wheelchair Houses." Paralyzed Veterans of America, Inc., 1959. "Work Simplification for Child Care," (Bulletin). The School of Home Economics, University of Connecticut, 1962. Yuker, Harold E., Cohn Alfred and Feldman, Martin A., "The Development and Effects of An Inexpensive Elevator for Eliminating Architectural Barriers in Public Buildings." 1966. Hofstra University, Hempstead, New York, 112 pages. -19- United Cerebral Palsy Associations, Inc. May, 1975 REHAB BRIEF BRINGING RESEARCH INTO EFFECTIVE FOCUS Choosing An Independent Lifestyle: Housing Alternatives for Severely Handicapped Persons Vol. I, No. 5 May 25, 1978 A paraplegic girl sees herself as "a veritable vegetable nity facilities. And the Architectural Barriers Act (Public trapped in a back room up two flights of stairs." Law 94-80), which requires accessibility in Federally How did she get there? Through a cycle that has financed housing built after 1968, is being more strictly become typical: a person suffers a broken neck. The enforced. Sections of the Rehabilitation Act of 1973, as person may leave a rehabilitation center as a functionally amended, hold promise for increased accessibility to independent individual. But there is nowhere to go community activities (504) and strong compliance proce- except to an institution, which enforces dependency. dures (502). Thus, the person loses rehabilitation gains. The problem of housing severely handicapped individ- Revised Accessibility Standards uals has reached major proportions. Because elderly persons now live longer than previously and many The American National Standards Institute (ANSI), a people survive serious accidents, millions of severely federation of trade associations, technical societies, and handicapped Americans need housing alternatives to professional and consumer groups, has set standards for institutionalization. making buildings and facilities accessible to physically No universal solution to this housing problem exists. handicapped persons. ANSI is revising these standards, Because society is unprepared to cope with handicapped which, for the first time, will include specifications for individuals, they are frequently shut away in institutions, construction of residential structures. The new standards even though with adequate support services they could are scheduled to be published in 1978. The Department live independently. of Housing and Urban Development (HUD) plans to A severely handicapped individual who leaves a nurs- initiate the building of model units that meet the new ing home has an increased feeling of worth, independ- standards in order to determine if such units will be ence, and accomplishment. Related to this improved marketable. self-image are increased possibilities for employment and education. CAMPUS-BASED HOUSING When severely handicapped individuals do not ALTERNATIVES achieve independence, the costs become staggering. For In this country housing experiments have stressed example, for spinal-cord-injured individuals alone, they helping the handicapped individual function at as high a amount to $2.4 billion nationwide for home and institu- level as possible and providing the least restrictive envi- tion care and medical costs. It costs anywhere from ronment. Not surprisingly, many such efforts have been $2,500 to $7,500 to care for a totally disabled spinal- on college campuses and have involved young adults cord-injured person in an institution. with high levels of motivation and ability. SEVERAL HOUSING SOLUTIONS ARE The University of Illinois-Urbana-Champaign POSSIBLE Started in 1947 for a handful of handicapped students, Various groups and individuals have attempted to a project at the University of Illinois now houses provide housing alternatives to living in institutions. The hundreds of students. This program gives students barri- ideal solution would offer the handicapped individual er-free access to all aspects of campus life. In the past 30 total accessibility to the entire community. We are far years, students have lived in a variety of housing facili- from this goal, since less than one percent of U.S. ties, including a nursing home, a transitional halfway housing has wheelchair accessibility. house, a mobile home, army barracks, campus dormito- A nationwide campaign for the elimination of archi- ries, and community apartments. tectural barriers is necessary for the achievement of com- The University offers such support services as medical munity accessibility. Such a campaign is not effectively consultation, physical therapy, occupational therapy, underway, although some recent developments point to counseling, and specially designed buses accessible to growing recognition of the need for accessible commu- wheelchairs. Handicapped students are not assigned REHABILITATION SERVICES ADMINISTRATION OFFICE OF HUMAN DEVELOPMENT SERVICES DEPARTMENT OF HEALTH, EDUCATION AND WELFARE WASHINGTON, D.C. 20201 attendants automatically, but only if they really need unresolved. Three groups appear to benefit from some assistance. sort of group residence, such as hostel, halfway house, After a week's crash course in independent living, motel, dormitory, clustered housing, congregate hous- several C5-C6 quadriplegic students have moved into ing, or commune. High-level quadriplegic individuals dorms with no attendant care. Those not ready to live (C2-C4) may need skilled nursing care as well as attend- independently move into Tanbrier Halfway House, ant care and housekeeping. A group residence helps which provides apartments for able-bodied students who them to share costs. Many disabled persons use the help with attendant care. group residence as a transitional facility where they can get peer counseling while learning independence. Others The University of California-Berkeley simply prefer life in a sheltered facility. The Physically Disabled Students' Program grew out of a residential program for quadriplegic students that Integrated housing helps the disabled individual feel used an on-campus hospital as a dormitory. Created and more a part of the community and promotes independ- run by disabled students, the program provides such ence. One of the few studies of preference suggests that services as arranging for living in relatively unmodified most disabled persons, particularly those who are young apartments with backup attendants for emergencies and and severely disabled, prefer to live among able-bodied a 24-hour telephone service using speaker phones. Lists people. However, many segregated housing approaches of apartments and of prospective attendants and cooks have been successful. assist students in arranging to share apartments and services. Program staff also contact apartment manag- ers about making small necessary physical changes in Eastern Paralyzed Veterans Associations (EPVA) their apartments. Students share their knowledge and experience in cooking, living independently, medicine, With the philosophy that "any realistic housing pro- equipment, and preventive care. The Berkeley Physically gram must integrate disabled individuals with the main- Disabled Students' Program office provides services stream of society," The EPVA set up Rosogin House. It including resource directories, peer counseling, and ad- serves as a transitional facility that attempts to complete vocacy. the rehabilitation process while integrating disabled individuals into society. It began with three apartments The Boston Center for Independent Living (BCIL) for veterans with spinal cord injuries who wanted to leave a hospital or had unsatisfactory housing. Resi- Started in 1974 for nine severely disabled college dents, who stay an average of 6-9 months, share costs. students, the BCIL served 50 individuals in its first 3½ Publicity from this project has made the EPVA a years. The Center's emphasis is a program rather than a clearinghouse for wheelchair apartments. facility, to help disabled persons bridge the gap between total dependence and independent living. BCIL coordinates three separate phases of living. A transitional living program trains residents of an apart- There are men living in veterans hospitals who ment complex in social and physical skills. Cluster could hold down a job or go back to school and get housing in modified apartments with an attendant pool back to the business of living if they had a place to and night attendants provides greater independence than live.-EPVA President Terrence J. Morkely, a the transitional program. To live independently, stu- quadriplegic. dents moved to accessible apartments, usually shared with an attendant. BCIL residents elect the Board of Directors, and several disabled persons, including former residents, are Individual-Created Programs on the staff. A quadriplegic victim of poliomyelitis created an independent living facility out of an apartment building The Center for Independent Living has obliter- that was being foreclosed. He hires the staff, and resi- ated the lock and knocked the cage door off its dents pool funds to pay for attendant care. The disabled hinges. It has shown me that there is a functional residents live on the first floor, with attendants and five difference between merely existing and living for community families on the second floor. The manager of something brighter; the challenge of being individ- this project says that it would be practical if the residents ually responsible for my own actions. This is what owned the complex, and they are seeking funds to I was prevented from doing before I came to purchase it. BCIL.-Walter Zarnowski, the first resident of A woman disabled by rheumatoid arthritis created the BCIL. Glass Mountain Inn, Inc. in Anaheim, California. The 10 disabled men and women and their 5 attendants form a close-knit and supportive "family." GROUP RESIDENCES Handicapped Independence Proven is a business proj- ect created by a San Diego contractor. He converts Should severely handicapped persons live in group existing facilities into duplex units that include resident residences, or should they be integrated into community attendants and housekeeping staff for small groups of housing? A matter of much debate, this issue remains disabled persons. COMBINED GROUP RESIDENCES AND Many disabled and blind persons have moved to COMMUNITY INTEGRATION Berkeley because of the CIL, which provides more than 1,400 services a month. The California Department of Rehabilitation recently Cooperative Living-Houston used Innovation and Expansion grants to fund several Begun in 1972 as a residential project in a dormitory- similar programs in other California communities. style setting, this project entered a second phase with Michigan and Massachusetts have also used Innovation housing clusters in apartments in different sections of and Expansion funding to seed the development of Houston. The project initially tested ways disabled community-based independent living programs run by persons could share services, such as attendants and self-help organizations. transportation. It also attempted to assess the changes this different lifestyle would bring in resident behavior PROBLEMS IN FINDING HOUSING and attitudes. The results documented changes in physi- ALTERNATIVES cal independence, medical status, educational and/or vocational activities, leisure activities, social relation- Many obstacles exist to creating housing alternatives ships, patterns of interaction, economic status, and atti- for disabled individuals. First housing must be adapted tudes. as much as necessary for the handicapped person to live By Sept. 1975, all residents had moved from the as independently as possible. dormitory building to apartment clusters in the commu- In many projects resident employment earnings must nity or into individual living arrangements. As an out- meet at least part of the costs. Thus for many, employ- growth of this program, four housing clusters were de- ment or other substantial income becomes a necessary veloped in community apartments. condition for successful independent living. The major- A second major outgrowth of the original Cooperative ity of residents of the various housing alternatives are Living project is a 6-week live-in transitional program to either in school or employed. teach independent living skills. This project, called New Attendant Care Options, offers training modules in living arrangements, attendant management, financial management, function- Recruiting and keeping the attendants who provide al skills, sexuality, consumer affairs, mobility, medical the necessary supportive services is a problem that has needs, leisure time, and vocational/educational oppor- not been solved completely. Usually the salary offered is tunities. The program emphasizes field trip experience, not enough to make being an attendant an attractive and active handicapped persons from the community career choice. Projects located at or near colleges and lead many program activities. universities have succeeded in drawing a sufficient pool of attendants from the student population. TOTAL COMMUNITY INTEGRATION Southern Illinois University-Carbondale, which has 600 blind and physically disabled students, offers two Center for Independent Living (CIL)-Berkeley credit hours per semester for being a good attendant. Generally considered the country's most effective self- Credit is based on evaluation by the disabled person and help program for physically handicapped persons, this two counselors. Some success has also come from using innovative program was created and directed by and for mentally retarded persons as attendants for physically physically disabled and blind persons. It does not offer a handicapped persons. residential center. Instead, CIL members live throughout A program at Woodrow Wilson Rehabilitation Cen- ter, Fishersville, VA, is one of several that teach handi- the community in homes and apartments. The program was founded in 1972 as a logical outgrowth of the capped individuals to carry out procedures themselves or Physically Disabled Students' Program at the University be able to tell anyone how to do them. The program of Calfornia, Berkeley. works on the theory that a well-trained quadriplegic The Center provides many services. Attendant referral individual will never need a highly-skilled attendant. counselors match prospective attendants with clients and Funding for consumer-directed attendant care or per- give advice on hiring, firing, and training. Counselors sonal care is available in a few states and from such other and specialists assist the clients in advocacy, job devel- sources as Social Security, the Department of Vocation- opment, independent skills living, health and mainte- al Rehabilitation, Medicaid, and Social Services. nance, and using community resources. A housing department helps clients find places to live and facili- Transportation tates any necessary housing modifications. The Blind Transportation, a key to severely handicapped indi- Services Department provides special services for blind viduals' access to the community mainstream, is still not clients. In addition to a transportation system that completely satisfactory. Although most projects offer makes vans with hydraulic lifts available throughout the some transportation assistance, it does not always meet area, the Center provides a wheelchair repair shop that all needs. Few residents of Houston's Cooperative Liv- services both manual and electric wheelchairs. Mechan- ing Project were entirely satisfied with their transporta- ics of an automotive and machine shop conduct classes tion arrangements, and this dissatisfaction seems typical. for staff and clients in vehicle maintenance, and they also Efforts to make public transportation more responsive service all CIL vehicles. The Communications Depart- to the needs of handicapped persons should have some ment publishes The Independent, a quarterly magazine impact on the current requirement for special transpor- with a national circulation. tation as part of independent living programs. RESULTS OF EXPERIMENTS IN IMPLICATIONS ALTERNATIVE HOUSING Legislation and regulations should be altered to make it easier to establish independent living facilities for Sheltered housing is a viable alternative to institu- handicapped individuals. Legislation to provide front tionalization. A HUD project, the Highland Heights money for staff and services could assist in starting new Experiment with barrier-free apartments found that type centers. And providing funds directly to the disabled of housing more efficiently utilized medical care facilities individual would enable him to select and hire his own and services and reduced unnecessary and costly personal care provider. institutional care. Results of the other housing projects Large group facilities are undesirable because they support this finding. become institutional as their residents grow gradually more dependent and isolated. Social contacts and activities, functional status, and A correlation exists between a handicapped health status improve with independent living. The results person's housing situation and vocational productivity. of the Houston Cooperative Living project clearly The results of the Houston project support the trend support this conclusion. And the most dramatic results reported by the Berkeley Center for Independent Living toward helping persons with severe handicaps move out of institutions and into the community. They also were in the area of preventive care. The incidence of pres- indicated, however, that making the transition into the sure sores and urinary infections dropped to almost zero. community can be difficult. Independent living costs less than institutionaliza- tion. In 1975, total monthly living costs for a resident of The degree of physical disability is not a way of Houston's Cooperative Linving project were $570. The predicting success in independent living situations. First monthly cost of nursing home care was $743, and an to be placed in the Boston Center for Independent Living apartment with private attendant cost $840. These costs were quadriplegic persons. One could move only his head, include rent, meals, attendant, transportation, and and another needed a respirator. personal expenses. Each community should attempt to offer severely handicapped persons an opportunity to get out of nursing Independent living affords more employment op- homes and into more independent living. portunities than institutionalization. Of the 40 residents in Houston's Cooperative Living project, none had jobs Rehabilitation programs should teach more effective before entering the project, but 28 had either full or part independent living skills. The Houston project found time jobs after entering the project. necessary the ability to manage finances, to locate com- munity resources and manage these contacts skillfully, Independent living in a group facility gives residents and to manage social relationships with persons who more social closeness, providing emotional support and provide physical assistance. modeling opportunities. But many persons object to being segregated from the rest of society. Houston's Rehabilitation practitioners should work with self- follow-up study found that residents of the Cooperative help organizations of disabled persons to develop Living project, dorms, and nursing homes had more community-based independent living programs. Presi- social closeness, which fostered group cohesion and some dent Carter's position paper "Jimmy Carter on Ameri- degree of conflict. Frequently, as they gain self- cans with Disabilities" states, "We must broaden the confidence, group residents outgrow the need for traditional concepts of rehabilitation to include inde- closeness and choose to move out into the community. pendent living as a supported rehabilitation objective." There are advantages of both shared and private attendants. In the Cooperative Living project, private REFERENCES attendants gave the resident control over the attendant's time, but with shared attendant services, there was less Corcoran, Paul, et al. The BCIL Report. Boston, Mass.: Tufts/New conflict because no two persons spent a lot of time England Medical Center, 1977. Fay, Frederick A. Housing Alternatives for Individuals with Spinal together, and costs were reduced. Cord Injury. Tufts New England Medical Center Rehabilitation The location of a group residence in the community Institute, 1977. Greenstein, Deborah, Charles Gueli, and Edmond Leonard. No One at is important. Most of the Cooperative Living residents Home-A Brief Review of Housing for Handicapped Persons in felt that part of the solution to transportation problems Some European Countries. Rehabilitation Literature, 1976, 37(1), 2- lay in locating their residence in a neighborhood that 9. offered contact with the mainstream of society and that Laurie, Gini. Housing and Home Services for the Disabled: Guidelines was within wheelchair rolling distance of business and and Experiences in Independent Living. Hagerstown, Maryland: Harper & Rowe, 1977. community facilities. McEwen, Jan. Center for Independent Living: An Overview. Rehabili- The successes of all the housing alternatives indicate tation Counseling Bulletin, 1976, 19(4), 616-619. the need for diversity of housing options. There is no one Pflueger, Susan. Independent Living: Emerging Issues in Rehabilita- tion. Washington, D.C.: Institute for Research Utilization, 1977. best alternative. Different individuals are comfortable in (RSA Grant 22-P-59019). various settings, and it is important that handicapped persons have a range of choices. Copies of the BRIEF are available from UF-RRI. Prepared by Rehabilitation Research Institute College of Health Related Professions University of Florida Gainesville, Florida 32610 SECOND GENERATION INDEPENDENT LIVING PROJECTS - WEST COAST By Bruce M. Brown Bruce M. Brown Califórnia State Department of Rehabilitation 830 "K" Street Mall Sacramento, CA 95814 Bruce M. Brown California State Department of Rehabilitation 830 "K" Street Mall Sacramento, CA 95814 (916) 445-9586 SECOND GENERATION INDEPENDENT LIVING PROJECTS - WEST COAST By Bruce M. Brown Gaps and Continuities Where generations exist so do gaps which separate them and conti- nuities which link them. Independent Living organizations of severely disabled people put a premium on independence. They are not willing to work as shadows of any progenitor organization, regardless of the debt they recognize or the appreciation they feel. Each will create its own individuality as a separate undertaking by new people in a new setting. New Independent Living groups are also conscious, however, that they are part of a movement and that they draw strength both from their more solidly established precursors and their contemporaries. Independent living for severely physically disabled people started in California with the new kind of social organization and collective Brown - Second -2-- activity that disabled people created in Berkeley over a period of about ten years. Now the products of this activity are being transplanted or grown from seed in at least eighteen new California locations. The issues and questions we have identified for our study of the California ILF experience are, "What does it take for success in a second generation of ILPs?", and "What is success for ILPs?". CIL Berkeley: The First The organization that stands in history as the one and only first generation California independent living program, Berkeley Center for Independent Living, went through an experience that can safely be termed unrepeatable, since by definition there can be only one first experience pf a kind. So CIL's beginnings had several important features that were unique among the developing ILPs. Before Berkeley CIL ever became recognized as an "independent living program" its founders experienced several years of increasing group ac- tivity and organization. No one knew what specific result this activity would lead to, much less that a special new kind of service organization was being created. These preparatory events took place in a closely knit group of severely disabled people on and near the University of California campus. The University, along with the California Department of Rehabili- tation, were sponsors of the group's coming into existence but they had only the most modest and indefinite expectations about what their help would produce. Roots of the, Movement In 1962 and 1963 two quadriplegic men, Edward Roberts and John Hessler, were admitted to the University as part of an experiment that would allow them to live on campus, away from their family homes. This Brown - Second Generation -3- unprecedented and risky step was based on their taking campus residence in a carefully controlled medical setting at the Cowell Student Health Service Hospital. After two years they were joined by a third quadriplegic student, and in the next year by five more equally disabled persons. It was the "carefully controlled" aspect of hospital life at Cowell which most contributed to developments that followed. Hospital regimen proved to be more of an incitement to change than a protection to the project's beneficiaries. Members of the disabled resident group began acting together to get more control of their lives, beginning in the hos- pital situation, then expanding to other situations. The severely disabled individuals at Cowell were clients of the California Department of Rehabilitation (DR) and beneficiaries of Aid to Disabled and Medicaid. By carefully studying and insistently using their entitlements, with support of their DR counselor, they were able to hire personal attendants, reimburse the University for a substantial part of their extra living and medical costs, pay their educational expenses, and have a little spending money left. By learning how to care for their own physical health and being mentally motivated to do it, they showed them- selves less delicate physically than anyone had imagined. By 1970 there were twelve Cowell residents in the project, as well as five ex-resident students living off campus on their own. At the end of the 1970 academic year success came to the wildly mad notion that disabled students could get a federal Office of Education grant and become providers of official University services to disabled students. Thus, the UC Berkeley Physically Disabled Students Program (PDSP) came into being. A New Social Invention Having no real precedents to guide or limit them, the designers of Brown - Second Generation -4- PDSP relied on their own experience. They built things into the program which they had found they needed to make life liveable and hopeful enough to be worth working and studying for. Getting financial and medical bene- fits to survive on, finding dependable attendants through a referral system, getting power wheelchairs and keeping them in operation, having help in finding housing outside Cowell Hospital's relatively constraining environment -- these were the basic components which went into the PDSP services system. Control of this service program by its disabled consumers was another key concept, made possible in PDSP by the Cowell Project group's having brought the grant to the University. One decision made by the PDSP leaders shaped the program's character significantly; they would not try to establish another large group living facility off campus. Accessible private off-campus rentals, with personal or shared attendants, was the chosen alternative to living at Cowell. This alternative was becoming an earlier and earlier choice of many severely disabled students who were being admitted to Cowell in steadily increasing numbers. The typical stay in hospital residence, which had been six years at the beginning, shortened to one year for many by 1969. Going Off Campus Seeing the unique services offered to physically disabled students through the University in PDSP, many non-student citizens in Berkeley who were severely physically disabled began to seek PDSP services. Initially, the project took a relaxed attitude toward these "outsiders", but the recurring thought of a possible audit of the grant made project personnel increasingly uncomfortable. An off-campus organization was conceived as the logical solution to this problem by PDSP. A growing number of severely disabled UC alumni in Brown - Second Generation -5- Berkeley included many people with leadership and organizational abilities. This was also true of some disabled people in Berkeley who had not been UC students. Director John Hessler and others from PDSP brought some of these people together in late 1971. Out of this effort came the first community independent living organization, with Larry Biscamp and Philip Draper as its elected leaders, using "independent living" officially for the first time to describe the nature and purpose of the support services system put together in PDSP. The new organization began with loaned office space in the house where PDSP had its office near the campus. Its only assets were the founders' spare time, a few volunteers' labor, and an amazing record of accomplish- ment since the Cowell project began. With no more than this, the organizers boldly named their new creation a "center": "The Center for Independent Living". The New Center Independence from the University and a completely new start in the Berkeley community left CIL free to choose any form of organization and any balance of politics and advocacy in relation to direct services. Its first year's support was largely from an RSA planning grant, which con- ferred the freedom to plan, rather than demanding immediate production of services and results. One of the first decisions by CIL was made when they found that young blind people in the University area wanted independence and mobility in ways similar to themselves and were willing to join forces as partners in the CIL organization. Interested blind leaders and blind services were given a guaranteed place in CIL from that time on and coalition became a policy. Brown - Second Generation -6- After several months of planning, CIL's proposal for an expanded system of IL services was drawn up to provide: (1) recruitment, training and referral services to help make good attendants (for orthopedics) and readers (for blind) more available; (2) an accessible housing survey and referral service; (3) wheelchair repair services; (4) -mobility and indepen- dence training for blind persons; (5) van transportation which would carry people in wheelchairs; (6) financial aids counseling and advocacy for individuals; (7) independent living skills (occupational therapy training for personal care and living); and (8) community action and other public advocacy efforts related to these and other areas. Essentials for Success When the Center went into operation in 1972 they concentrated on those service areas considered indispensible to independent survival for the severely disabled: attendant/reader referral, housing referral, transportation, financial advocacy, and community action/public advocacy. But it was not the services provided that made CIL a new social invention. It was the concept which CIL inherited from PDSP of having such services in an integrated system, controlled by the disabled themselves, and not tied to a group residence. These concepts remain the essence of indepen- dent living programs for the severely disabled in California. Lean Years Despite the dramatic appeal of the accomplishments of CIL and its leaders, the new organization was headed into hard times financially. It started with $50,000 of RSA facilities planning money granted on the basis of its striking novelty and potential. But in an era when money approp- riated to HEW was being held back and stretched to its limits, there would be two years before any more federal money came CIL's way. Brown - Second Generation -7- Survival was accomplished by piecing together small amounts of city rent money, county client services payments, University money, and private gifts from individuals and foundations. Staff and some other leaders lived for months on a subsistence level in an apartment which also served as CIL's office. At times prospects for funding looked so grim that moving back into a shared office-with PDSP seemed inevitable. It was not until after Ed Roberts' return to Berkeley and his appointment as the second CIL Director that lack of funds ceased to be an acute crisis. The Right Time and Place Being in Berkeley in 1972, CIL was well located to benefit from the collective gains of the equal rights and equal opportunity movements in which other people from Blacks in the 'fifties to women in the 'seventies had won recognition and redress. Minorities and stigmatized people of many kinds were no longer ashamed and apologètic about themselves and were achieving a sense of positive group identity. It was an era of "movements": mind-expansion, self-realization, non-violence, consumerism and sexual freedom, among others. But an especially important influence came from the self-help therapy movements and other organizations modelled after Alcoholics Anonymous, such as self-help drug treatment groups. The self- help concept spread to movements for sufferers from a multitude of diseases, handicaps and problems. Thus the path for a self-help group of severely physically disabled people in California, while not smooth, was well worn by predecessor and companion groups. A Boost from State Government In 1974, campaigning on a platform that promised more attention to people on the bottom of the heap, Edmund G. Brown, Jr. was elected Governor of California. As Governor, Brown used his appointive powers consistently Brown Second Generation -8- with the spirit of his campaign, and Edward Roberts, who had become Director of CIL in 1974, was appointed to head the State Department of Rehabilitation. - Roberts had been impaired at age 14 by polio, which all but totally destroyed his limb and hand functioning and seriously hampered his breathing. As a leading supporter and contributor to PDSP and CIL in Berkeley he strongly favored the independent living concept. He was also a living example of what could be accomplished by a severely disabled individual. When he became DR Director, Roberts first took organizational steps to re-emphasize services to severely disabled people as mandated by the Rehabili- tation Act of 1973. Then he used resources available in his department to open the way for more government support to IL programs in California. He began by allocating more than $700,000 in federal Innovation and Expansion (I&E) grant funds to ILPs. As his Assistant Director, Roberts appointed John Hessler, who had founded and directed PDSP and was a founder of CIL. Hessler's main task for six months was setting directions for grants and de- velopmental work with ILPs. Only after this was administration of the IL grant program fully turned over to the Community Resources Specialists who regularly managed grants to rehabilitation facilities and workshops. The Second Generation Severely disabled people in California who were eager to start ILPs in their communities began organizing and applying for the funds which the Department could make available for IL organizations in 1976-77. Ten applications were received and nine applicant ILP organizations were awarded grant funds averaging $72,000 each for the first year. The or- ganization whichfailed to receive an I&E grant, plus others which had begun activity but did not apply, and one which started too late to compete, all had to rely on other sources of support. TWO of these developing ILPs Prown - Second Generation -9- were already receiving substantial grants from county government and were able to continue on this basis. They were later joined by one other simi- larly funded project. The other six second generation California ILPS followed another path, that of searching out what assistance they could find in their municipali- ties for getting started. They found Comprehensive Employment and Training Act (CETA) public service jobs, unused city-owned building space, and small appropriations of city money to be the best available resources for starting ILPs. The ad hoc approach to funding and concentration on local sources used by these groups is reminiscent of the first years of CIL in many ways, especially in that their growth was more incremental than that of the grant-funded second generation ILPs. Growth occurred gradually as new positions, space and funds were obtained, rather than all at once in a full blown organization and program structure to meet the demands of a single grant award. Cross Generational Continuities The second generation California ILPs have now existed for two years. It is now possible to identify some features which have remained generally continuous across the generations, as well as the differences between the early experience of these new ILPs and the first years of CIL. Of charac- teristics common to ILPs through both generations, the most significant involve campus contributions, private organization, consumer control, non-residential orientation, and multi-disability group coalitions. The Contribution of the Campus Jobs for university trained severely disabled people were created when the college and university systems in California funded and mandated positions of Coordinator for Disabled Services on each campus. Through Brown - Second Generation -10- these jobs, individuals trained in Berkeley's PDSP and CIL and also in the California Association of Physically Handicapped (CAPH) were seeded in communities throughout the state and given bases to work from in programs which usually included independent living services for students. Community interest and service requests from non-students usually followed. The campus co-ordinators and the student groups they developed then often pro- vided the initiative and the staff recruits for community ILP organizations when they were later begun. All in the Private Sector The idea of having a government agency set up and run independent living projects in California was never considered; at least there is no record of such a proposal. Starting with CIL, disabled individuals formed autonomous organizations of their own; or, if necessary, they joined forces with an existing private organization to create an ILP. Only then did they zero in on government agencies for financial and material support. Most ILPs in California are autonomously incorporated. Existing private organizations, other than CAPH chapters, have sponsored ILPs where an initial "grubstake" or matching money for a large grant was needed. In these cases, relative or total autonomy for the ILP is part of a future plan. Disabled in the Driver's Seat A board of directors and a top staff composed of severely disabled people were part of CIL from the start. In the second generation this has continued, at least to the extent of there being a strong majority of severely disabled members on the board and/or a severely disabled director of the ILP. In cases where a larger sponsoring organization with its own board and executive director is the recipient of an ILP grant, the ILP's Brown - Second Generation -11- board with a disabled majority sometimes serves as an advisory body and its director as a program manager. Thus a governing voice in these ILPs remains with people who live 24 hours a day with problems of severe physi- cal disability. Despite the energy limitations which often go with such disabilities, the inescapable nature of the problems has engendered a tenacity and a high involvement with solving them which account for much of the inventiveness and creativity in programs and services offered by' ILPs. Not a Place to Live California's severely disabled members of independent living organi- zations do not depend on being provided special group living facilities, even though this might be one alternative to offer when good accessible housing is scarce. They have entitlement through various public aid pro- grams to the means they need to arrange their own living situations. They need only the help of basic services such as consumer advocacy, housing survey and referral service and help with attendants to exercise this entitlement. Some advantages which ILPS cite as accruing from the non- residential approach are that: (1) conflicting interests of being both tenant advocates and landlords are avoided; (2) burdens and chores of property management do not tie up program energies which might go toward IL services and advocacy; (3) ILPs, which already provide a great deal of the social, political and work life for many members, remain less of a total environment for them than if they lacked their own separate resi- dences. More Than Wheelchairs CIL broke some precedents when it formed a joint organization of Brown - Second Generation -12- young blind and orthopedic-motor disabled. Later, deaf people and deaf groups were contacted and added their participation to CIL and most other California ILPs. These actions established a principle of coalition rather than competition among disability groups which has been followed generally in the California IL movement: Differences Between Generations A generation gap is the product of the experiential differences between those who came earlier and later in history. Recent ILPs began in circumstances that more resemble the contemporary 1978 situation at Berkeley and CIL than they do the situation CIL was in during its first two years. From the start, the second generation ILPs have had tenuous group bonds and uncertain impetus as a movement. Also, the new ILP organizations have necessarily begun working, as CIL does today, with less select cross sections of severely disabled people than those found in Berkeley in the early 1970's. And the new ILPs have certainly missed any chance to be "sleepers" and surprise the world with great results when little is expected. The new generation is cutting its teeth on problems of maturity without having had the formative experience which shaped the first genera- tion. The question now is whether they can maintain enough of the distinc- tive features of ILPs to keep their special value and effectiveness. Initial Substitutes for Group Strength In CIL's experience, formation of a community ILP did not begin until a cohesive group of severely disabled people had already existed in Berkeley for several years. If anything, later development and success somewhat eroded the initial group strengths in CIL. ILPs in the second Brown - Second Generation -13- generation, by contrast, were started before their social underpinnings were firmly established. Existence and activity of California Association of Physically Handi- capped chapters came before the growth of the ILP in several areas. These were the strongest beginnings toward developing communities of severely disabled people in those places at the time. There was also at least one founder in several ILP sites who had significant personal experiences with Berkeley CIL and who knew from this the kind of group base and movement character they could aspire to. Though important, in the second generation these assets did not begin to compare with the social substructure which CIL had at its beginning. There were at least three observable consequences to the new ILPs of having been organized before their social group and social movement bases became well developed. First, in the absence of these strengths, some other resources outside and inside the ILPs had to be called on to carry their developmental load. Second, the very fact. of calling on outside local resources required, at least temporarily, that ILPs accept some accomodation to the views of their local helpers. And third, formal pro- gram devices had to be added internally to substitute for the informal group resources which were not developed. Coming to Terms with Older Local Leadership Before an "independent living movement" of severely physically disabled people ever existed, there were a minority of the severely disabled who were able not only to survive but to make relatively independent lives for themselves. These individuals were often active in their communities as leaders, speaking for other physically disabled people. They had not been Brown - Second Generation -14- centrally involved in CIL, which had developed near a university campus and was based on a much younger self-contained group of leaders. Many of the younger disabled people had become conscious of themselves as "outsiders", removed from security and from full participation in life. They were strongly inclined to be activists, with at least a trace of radicalism. These people felt strongly about social justice, as exemplified by the sit-ins which were organized in 1977 to influence signing of the Rehabilitation Act Section 504 regulations. Along with many other fair-minded people, however, some of the older leaders among disabled persons viewed the radical style in Berkeley with unease and misgivings, mixed with unavoidable admiration for its potency and success. The 1977 sit-ins were not a comfortable time for many disabled people who had come to reasonably good terms with society as it was. Organizers of many of the second generation ILPs in California have necessarily included pre-1975 disabled leaders. Once organized, the ILPs found they continued to need the confidence, help and support of the older disabled leadership who were already active and working in their communities. These "old hands" were important as experienced board members, knowledge- able and influential fund raisers and skilled volunteers in special capaci- ties. But there was a price to pay for including these more experienced and established leaders. Their priorities leaned more toward direct services than the community advocacy and political action that the younger activists preferred. This has probably been less true of those non-grant based ILPs which had an opportunity to develop more slowly and carefully and to be more selective, choosing allies in line with their own inclinations. For a few second generation ILPs, the necessary organizational founda- tions came from an established group or agency which sponsored and gave its Brown - Second Generation -15- name to the new venture, or actually made the ILP a unit within the parent organization. This type of arrangement required an ability to work under the sponsor's board and executive director, to accept their administration and their management of money, and to tolerate their often non-militant approaches to program and politics. Programmed Substitutes for Natural Group Experiences A closely knit group which partakes of a social movement, such as the movement for "disabled rights", and which works closely on its members' individual and collective problems doesn't require much in the way of a special program or administrative structure. Members of such a close peer group can, for instance, advise, counsel, support and nurture one another; they can provide models, inspiration and hope to one another without a pro- gram called "peer counseling", and without a special peer counseling co- ordinator and staff of employees or volunteers. What happens, happens "naturally" because of the closeness of the group and the clear direction of its movement. On the other hand, an organization which is set up without any strong pre-existing group or close community of real peers does have a need to add some formal program provisions from the beginning in order to accomplish these same things. This is also true in various degrees for community and political advocacy, for help in getting fair assistance from Welfare, Social Security and Rehabilitation, and for helping people find attendants and apartments. In Berkeley, group cohesion and momentum of the movement at CIL's founding held off formal organization of many services and procedures until size and increasing complexities in CIL forced the issue. Second generation ILPs which were set up rapidly with I&E grants have had to assume Brown - Second Generation -16- the shape of formalized service programs much earlier in their existence than CIL did. The most apparent generational difference that results is that a concentrated effort to construct formal programs and get them running tends to detract from the political advocacy function of the pro- jects. Enter Intake and Evaluation As the ILP movement grew, SO did the number of disabled persons applying for services. With this increased demand came a new problem - dealing with more individuals who were not really ready for the servicesthe ILPs had to offer. The first generation at CIL started with a select population of highly talented severely disabled people who were already mobilized. These people had been attracted to Berkeley from all over the state and nation. Only after they were well developed did CIL have to deal with less ready applicants for services. But the second generation ILPs were faced with the dilemma of "unready" applicants from their earliest beginnings. Making judgements about "need and readiness" and applying them to the requests of fellow severely disabled persons does not come easily to an egalitarian ILP staff member. However, to see one's work in lining up an apartment or an attendant repeatedly "blown" by the person who is basically unready for these ex- periences and responsibilities is also hard to take. Initially the social agency idea of specialized "intake" assignments and a separate function of evaluating newcomers and their needs, seemed too "bureaucratic" to the California ILPs. Yet it is a solution which most have had to adopt. The worst effect of "unready" applicants is a preoccupation with crisis situations, leaving the ILP with few resources to support long term independence goals. This problem is most apt to be acute in urban core Brown - Second Generation -17- areas where severely disabled people frequently get stuck without adequate shelter, food or attendant care. One downtown ILP, using tough but realis- tic intake and referral procedures, saved itself from being pulled under by this problem through insisting that other crisis-meeting agencies in the city serve the severely disabled people who have the same problems of transience and marginal existence as their able-bodied counterparts. Ideally, an ILP has an array of services to fit a wide range of readiness. The experienced and perceptive intake counselor can see that some services are more appropriate for the newcomer than the things which the person may ask for. Such use of superior knowledge and judgement does, however, depart from the peer group ideal of equality. Follow-up contacts to see if individuals carry through and don't get lost in the service system are also effective, but may leave workers feeling more like parents or sheep dogs than peers. Upgrading IL Feasibility Second generation ILP programs give "counseling" an explicit and prominent place among their activities. The most commonly described un- readiness of applicants to use ILP services is psychological-social unreadi- ness; counseling is the most commonly planned corrective. In the early days of CIL, formally constituted counseling services did not appear to be necessary, so they were not offered. In the second generation ILPs, people who would have been considered "unready" in the early days are now probably the typical ones being worked with. Whether or not there should be counseling is seldom questioned. The questions which do surround the function are, "What kind of counseling is needed most and which works best in an ILP?", or "What differentiates Brown - Second Generation -18- peer counseling from professional counseling?", and "How much emotional working-through should be included, relative to a practical problem solving emphasis?" Living with a Timetable Structured external expectations have an important effect on those second generation ILPs which get their main support from grants. Others may be less affected because their financial eggs are not so much in a one-source basket, but they are still liable to be held accountable for the resources they are given- This will increase as the concept and general expectations of ILPs become more widely known. It is the fact of the grant, however, its monitoring and renewal, and the pressure imposed by its time and sharing limits which most affect the grant funded ILPs. I&E grants in California put the recipient on an implied three year timetable to self sufficiency, with support decreasing from 90 percent to 80 percent to 60 percent to nothing. The clock ticks and the sponsor watches and expects results. Search for Executive Ability The second generation ILPs were started with expectations that they would organize themselves promptly and start efficiently to generate reportable results. Effective organizational leadership and administra- tion are essential under these circumstances, given the narrow margin of economic survival in these organizations. Even the commitment of their members, their greatest and most valuable asset, can be eroded through inept management. Therefore, the ILPs had to search out the most experi- enced and skilled managers and executive leaders who could be found. For the ILPs with grant money this may be both more possible and more neces- sary than for those with other sources of funding. Brown - Second Generation -19- The ideal for filling these administrative positions is to find a highly capable administrator who is also severely disabled. However, it is not always possible to combine these two qualities in one candidate; in such cases preference has to be given to the skilled manager. The only available compromise occurs when the job can be split up and divided be- tween two people, one of whom is disabled. But in cases where practical necessity dictates the hiring of able-bodied directors, feelings of incon- sistency and misgiving still result and are an ongoing problem. Conclusion: Success and Survival Questions Answering the questions which began this article requires a defini- tion of "success". Success for an ILP is surviving as an organization. That means at least paying the rent and the staff, because failing in these things writes "finis" to the story. But it also means effectively and dependably turning out the services which severely disabled people in the community need to get and stay independent week after week. These things are the survival test of a good organization. However, success for an ILP also means surviving as a movement and as a group. If the activity of ILPs becomes too cautious about stepping on (or rolling over) toes, or if it becomes too impersonal to allow partici- pants to spend time joking and sharing with one another, then success in the ILPs' original sense of it will have eluded them. This part of success may be harder to attain and retain than organizational survival alone and may even be endangered by concern for organizational solvency and productiveness. From the writer's location on the West Coast, at the start of, rather than the conclusion of, a research study about ILPs, it seems likely that important keys to this second part of survival for ILPs are hidden among Brown - Second Generation -20- some things they have in common. We have reviewed some of these and will look at them more closely: at their affinity with the relatively unortho- dox student world of the campus, at their organizational autonomy, at their jealously guarded consumer control, at their avoidance as much as possible of the cares and conflicts of landlordism, at their openness to risk coalition with all disabled people in order to be strong in rela- tion to the able-bodied, sighted, hearing world, and other commonalities yet unidentified. Another place our study will look for answers is at solutions which ILPs find to discontinuity and rapid growth problems, such as those we have pointed out in this article. How well can government foster the start of intentional ILP organizations on a large scale without leaving them SO lacking in social strength and determination of direction that they are immediately unstable and prone to cautious and formalistic answers to their survival problems? How well can ILP leaders and staffers who are gaining a world of expertise in the work they do and in the field they have invented, and seeing the whole ILP enterprise prosper, not become too "professionalized"? With their increasing knowledge and responsibilities, how well can the leaders of the movement keep from becoming removed from the sub-world of severely disabled who are still deteriorating hopelessly and often ignorantly in outer darkness of convalescent hospitals, "homes", and other confining dependency centers? With all the urgency of legislation and politics and grants and appropriations and budgets and meetings, how well can time be made for seeing validity in these people's individual experiences, for listening to them and for talking with them outside of appointment hours to get across the "fellow-human-being-like-me" message? Brown- Second Generation -21-- And how well can the rest of the world leave control and ownership of ILPs to the severely disabled now that ILPs are accepted and sometimes famous? The answer to these questions is: only partially, since everyone involved is human. The next question is: will the outcomes be such as to permit ILPs to survive with their essentials intact? Our Independent Living Research Study will deal descriptively with these questions, and we hope to find some clues and answers in time to help make a difference in the outcome. # # # Mr. Brown is a Senior Analyst in the Research Section of the California State Department of Rehabilitation. He is currently serving as Director of the Department's RSA-funded Independent Living Projects Study. FOOTNOTES 1. The new work on which this article is partially based was done for an RSA Research Grant, 15-F-59045/9, with Drs. Herbert Leibowitz and Leonard Green as Project Coordinators for RSA. The author acknowledges the special help given by members of the California Coalition of Independent Living Centers and by California Department of Rehabilitation Assistant Director, John Hessler, in assembling and evaluating information, and the editorial decisions provided by Harry N. Greenblatt, Chief, and Barbara L. Jones, Office Manager, of California Department of Rehabilita- tion's Research Section. 2. From February 1968 to June 1970, an Innovation Grant from RSA to the California Department of Rehabilitation paid, in part, for special services to clients in the Cowell Hospital Project. EXECUTIVE SUMMARY OF THE COMPREHENSIVE NEEDS STUDY OF INDIVIDUALS WITH THE MOST SEVERE HANDICAPS This report is submitted to the Department of Health, Education and Welfare by The Urban Institute in fulfillment of Contract No. SRS-74-54 June 10, 1975 THE URBAN INSTITUTE 2100 M Street, N.W., Washington, D.C. 20037 38 We would think that much of the financing of both VR and an ILR program d be accomplished through the general health and income maintenance programs inted out previously. Lastly, in financing of a formula grant program of independent living, consideration should be given to the possibility of client cost sharing e some services provided under a program of this type might include those ally provided by the individual--meal preparation, homemaking, recreational vities, etc. Client cost sharing should include (1) payments associated with lusion in the program and (2) payments associated with use of the program's e benefits: ependent Living Rehabilitation or Not As contractors we can only suggest that the need for independent living abilitation is there and that the rehabilitation system as it currently exists ald provide such services as may be authorized. We were struck, however, by C potential cost of such a program and the minimal authorizations proposed in e previous bills. Given the focus in VR on the severely disabled, we would iggest not beginning a formula grant program of independent living until a inimum of $150 million per year can be assured to provide coverage just for hose currently in contact with VR and not served due to severity. Any lesser unds would be well spent in VR as it presently is structured. Congressional Interest in an independent living program might be effectively expressed through Ei- st mounting demonstration projects to work out the service delivery and coor- di: ation issues until such time as funding for both VR and ILR is available. The way to most easily accommodate a very modest program of independent living is through expansion of extended evaluation. One small step would be to have all per: ons thought to be infeasible due to the severity of their impairment go through a full program of such services. We would exclude those who are not actually but whose closure is based on other characteristics which : competitive placement difficult, such as age or inadequate education or skills. st of these persons seem to have few limitations in self-care and mobility. When so limiting the program, it is important to also establish new mea- ures of success. At present a client closed from extended evaluation without ocational rehabilitation is counted as a non-success despite the benefit received rom services. Certainly measurable, successful independent living outcomes can be defined: no longer needs attendant, can now travel alone, reduced need For assistance in homemaking, and so forth. If the ILR program were limited to those severely handicapped who get to a VR Agency but who cannot be vocationally rehabilitated, it is possible to avoid many programmatic issues concerning which services to provide, how to interface with other delivery programs and, at the same time, recognize the limitations of resources in dollars, facilities, and manpower. For 1972 we found 68,000 VR clients closed for severity. Our survey of VR clients showed 41 percent had Barthel scores reflecting moderate to severe dependency due to their impair- ment. If this applied across the board, there would have been about 27,000 clients with limitations. For $80 million, about $3,000 per client would be available for counselor and case service costs, as well as administrative costs. If any initiative is to be mounted in new areas, we would propose it be in the rehabilitation of persons in nursing homes and related long-term care facilities. While many persons in these institutions need some level of care and supervision, there are some who could be rehabilitated to their homes or more congenial community settings if they got some rehabilitation services. Movement to these settings could reduce outlays in Medicaid and Medicare for these individuals and offset costs of rehabilitation services. Demonstrations of the possibilities of such an approach prior to legislation would be desirable, but if the reform of health and long-term care programs proceeds rapidly, we 40 eel the State-Federal rehabilitation program and/or CMRCs should be written Ln, based on the face validity of the accomplishments in the field. Summing Up When we began this study VR loomed large. At the end we found that it accounted for about 2 percent of Federal expenditures on the severely disabled. the While its influence far outstrips that modest proportion, we wondered at expectations people placed on the program without the corresponding willingness to provide the resources. Any exercise which approaches a population from the perspective of "needs" of is very likely not only to find needs but also to find the associated costs meeting those needs to be very expensive. To have a comprehensive program for the severely disabled that comes anywhere near to living up to its name and expectations would cost billions. The Congressional authorizations, much less appropriations, belie the impulse. The $30 million first-year authorization could be spent entirely on demonstration projects. The Nixon Administration was, perhaps, more honest in saying it chose not to put up the resources, but it failed in dealing with the consequences. When Congress turns to VR to deal with the more severely handicapped, several things happen. Whatever the merit of digging into the pool of more severely handicapped, some of the traditional clients must be abandoned. These are clients whom many consider quite worthy of services. But to serve the more severe, given no additional resources, means something or someone has to go. The next thing that happens is that the risk of failure mounts, not so much because VR does not know how to rehabilitate but that the labor market does not easily accommodate the more severely handicapped. The number of closures drop. No matter that Congress may not mind, nor that good is done anyway. While Congress may be willing to watch the number of rehabilitations drop with some satisfaction that the more severely handicapped are better served, there is Special Article Housing? Or Housing Options??? MARIE McGUIRE THOMPSON and EDWARD H. NOAKES, AIA Introduction keynote speaker at the first National Conference on Hous- ing and Handicapped Persons held in 1974. A NEW RECOGNITION that the housing needs Recognizing the need for an architectural response to of disabled persons cut across a wide range of housing and other environmental needs of handicapped options is broadening the approaches to resolving the persons, Mr. Noakes initiated the first Task Force on problems of adequate housing for handicapped per- Barrier Free Design of the American Institute of Ar- sons. The new approaches encompass efforts to chitects and served as the first president of the National deinstitutionalize severely disabled persons by de- Center for a Barrier Free Environment, established in veloping group-based residences as well as the pro- 1974 by the American Institute of Architects, the Na- motion of adaptive housing to insure a freedom of tional Easter Seal Society for Crippled Children and choice in the community-at-large for less severely Adults, and the President's Committee on Employment of handicapped persons. the Handicapped. Two of the nation's best known authorities de- He has testified on behalf of the American Institute of scribed some current efforts that are based upon Architects at Public Hearings on Housing conducted by these principles at the 1976 Convention of the Na- the Architectural and Transportation Barriers Com- tional Easter Seal Society of Crippled Children and pliance Board. As a member of the Executive Committee Adults. This article summarizes papers presented by: and Chairman of the Committee on Barrier Free Design of the President's Committee on Employment of the Mrs. Marie McGuire Thompson Handicapped, be serves on the Secretariat of the American Mrs. Thompson has been involved since 1942 in both National Standards Institute for the project to develop de- local and federal aspects of the design operation and man- sign standards for accessibility in housing and other agement aspects of housing for low-income persons, the el- buildings for persons with handicaps. derly, and handicapped people. In 1973 she began serving He was the first recipient of the E. B. Whitten Silver as housing specialist for the International Center of Social Medallion, a national citation from the National Re- Gerontology; she has conducted private consultations with habilitation Association in recognition of his contribution public and private developers on congregate housing and to creating a nationwide environment free of barrier to housing for persons with a range of handicapping condi- handicapped persons. tions, including physical handicap, developmental disabil- ity, and mental retardation. Summary of Paper by Mrs. Marie McGuire From 1961 to 1967 she served as Commissioner of the Thompson Public Housing Administration, having been appointed A project contracted by the U.S. Department of to this position by President John F. Kennedy and con- Health, Education, and Welfare (HEW) to the Na- firmed by the Senate Committee on Banking and Cur- tional Association of Housing and Redevelopment rency on April 25, 1961. Officials (NAHRO) aims at stimulating community Currently she is serving as project director of a Health, action by bringing builders, developers, and finance Education, and Welfare (HEW) study on a local-action agencies together with organizations serving the plan for housing for the developmentally disabled in con- handicapped to 1) convince the building professions junction with the National Association of Housing and of both the need and the existence of this strongly Redevelopment Officials and is the author of a position emerging housing market, and 2) convince the or- paper on housing for the handicapped for the Mershon ganizations and individuals concerned with the well- Center, Obio State University, funded by HEW. being of handicapped persons that the living ar- rangement is an essential service toward attainment of Mr. Edward H. Noakes the normalization goal. There is little doubt that pub- Edward H. Noakes, AIA, heads bis own architectural lic and private developers are interested and want to firm in Washington, D.C., where be specializes in the know what is needed. design of health facilities and housing for the aged and To nonhousing organizations, the housing field ap- the handicapped. He has authored several articles and a pears to be a most complicated and frustrating maze publication on planning such aspects of housing and was (as indeed it is). However, once service organizations 106 REHABILITATION LITERATURE SPECIAL ARTICLE accept housing as one of the most basic services, then counterparts, will be required to institute a series of it seems to me that linkages between the building and training sessions until finally there is at least a service fields can be made and appropriate housing, semblance of national coverage, a sharing of knowl- even for the severely handicapped who need atten- edge about resources available to achieve this too dant or life-supportive services, will become part and long delayed broad housing program. parcel of the joint planning process. To help bring this linkage about, a Guide entitled T here are numerous advocacy activities that can Housing for the Handicapped and Disabled: a Local Ac- result in use of a community's existing housing tion Guide (available from National Association of stock through adaptation or rehabilitation (the roles Housing and Redevelopment Officials) has been de- of both public and private developers and owners), veloped under the NAHRO Project, sponsored by the use of multifamily apartments or homes, and the U.S. Department of Health, Education, and Wel- other opportunities now existing in most com- fare (HEW). munities. Undoubtedly there are public or private It is significant that it was a service-oriented branch property owners in all communities willing to make of the federal government such as HEW that per- structural changes necessary to accommodate persons ceived-housing as a service without-which many using mobility aids if the situation-i brought to their handicapped persons could not hope to achieve a attention. Again, housing advocacy may result in pub- normal life-style. This would indicate that national, lic or private builders designing new housing specifi- state, and local organizations who are service- cally to make environmental coping possible, and oriented, might rethink their function and add the liv- thus increase housing options and supply. In the pro- ing arrangement as an essential service and a base vision of group housing for mentally retarded per- from which other services can more readily be deliv- sons, existing housing again can be used, for the goal ered to more persons. Once this concept is accepted, is small-group homes that simulate a family in both more and more service-oriented groups will in fact size and operation. Here, probably the most baffling see to it that housing of one kind or another is part of problems will be neighbor attitudes, plus zoning their responsibility and will seek to advocate, spon- complications, since in most communities antiquated sor, or stimulate its production in any number of zoning laws may not have accepted a small group of ways. unrelated persons as a "family." If small-group homes The Guide is designed to suggest effective local ac- are used for developmentally disabled persons who tion in the housing field by organizations interested may have both physical and mental functional handi- in one or another type of handicapping condition. It caps, the barrier-free design will be an added dimen- sets forth as simply as possible the major steps in- sion. In these cases, it is important, first of all, to de- volved in developing or increasing housing oppor- cide on what is the best housing solution for what tunities for handicapped citizens in the communities handicapped persons and relate the design and de- of this country. It is written to and for persons who velopment to the capacity of the residents. heretofore have not been involved in the design and Another advocacy activity is a search and find serv- operation of housing with the hope that, being aware ice. Locating housing that is usable by handicapped of what is required to produce housing, groups in the persons reduces the person's difficulty of getting cities and towns of this country would undertake to around town to find usable housing. Süch a local in- provide it. ventory, kept current, would be an enormously help- One requirement of the contract on the Guide ful service. In the course of making such a housing called for its being tested by professionals, consum- inventory, note also should be taken of those dwell- ers, and citizens in three localities, each to critique it ings that could be used by certain handicapped per- in terms of their local interest in a particular handi- sons if minor adaptations are made and barriers re- capping condition. In this way, the local point of view moved. To provide housing without responsibility for with respect to its applicability to their needs would the capital cost, organizations might lease public or be tapped. These critiques are a valuable addition to private dwellings, the agency then subleasing to the body of knowledge and opinion of professionals handicapped clients. Rent supplements for low- and consumers in the kinds of living arrangements income persons will be covered and the leasing of most acceptable to them and to their communities. private properties in many parts of the city will be Using the Guide as a basic text, a training institute covered as another potential. Organizations may will follow to train some 50 persons in its use and its handle the leasing arrangements, rent collection, and applicability to their organization's housing efforts maintenance, or they may prefer to leave these opera- and to the efforts of any interested community. Or- tional aspects to the owner. ganizations, through their state, regional, or local Local service organizations are recognizing that APRIL, 1977, Vol. 38, No. 4 107 SPECIAL ARTICLE normalization can come about only in an appropriate (HUD) recognized this when it undertook the proj- community-based living arrangement. While many ect to revise the design standards for accessibility and states are deinstitutionalizing their handicapped or expand them to include housing. The soon-to-be elderly patients, few have a local plan that can pro- completed project is particularly noteworthy for en- vide appropriate housing with services needed to sus- dorsing and promoting the concept of adaptable hous- tain the severely handicapped in independence. Cruel ing. and unusual punishment may result. But, thanks to The term adaptable means simply that if you are the development of new planning aids, assistance is at fully able to cope with all the parts of your housing, hand. including bathrooms and kitchens, it would simply present you with greater ease and safety and conven- ience. If and when you lost your coping ability and, Summary of Paper by Mr. Edward N. Noakes say, ended up in a wheelchair, your home could adapt Given the mandates of recent laws affecting per- to your needs. Proper door widths and swings would sons with disabilities, adequate housing should already be in place as would proper storage, closets, quickly become recognized as a prerequisite for all and electrical outlets. If, for whatever reason, you other activities of life, particularly the employment of needed the oven top, sink, or counter to be lower, it handicapped persons. In a sense, housing is basic to could be easily and inexpensively done. Space would our total social structure, reflecting both psychologi- be in your bathroom for your wheelchair. If you got cal (inter-relationships) and economic aspects of our arthritis, door latchs, window pulls, and all the other lives. Yet today we have no national policy to guide things you operate with your fingers (like taps) nor- the implementation of these concepts when it comes mally could be operated without pinching, pulling, or to providing housing options for persons with handi- turning hand actions. If you lost your sight or hear- caps. ing, signal systems could be added to provide sup- Right now, not many people, including legislators, port. If it's an apartment house, its public spaces agree that, first, there is a serious and large gap in the would be fully accessible. housing supply and, second, that to fill it is neither The new Standards will address this concept. For traumatic nor expensive. The primary thrust of the instance, specifications will require that the entry 1974 Housing and Community Development Act is level of the dwelling unit shall have a kitchen, full to return authority and resources to responsible and bathroom, living room, dining area, and at least one accountable local officials. This can be good, because bedroom or sleeping area. Provided at entries shall be it gives us access to the housing decision-makers. On a storage space that is large enough to store a wheel- the other hand, as Mercer Jackson, of the staff of the chair or walker. Kitchens shall be adaptable to pro- Housing Sub-committee that wrote the Act, has said, vide sufficient space for maneuvering wheelchairs, "it carries no banners for the handicapped" and "pro- storage units shall be within reach, and counter tops visions for them are scattered throughout the Act like and fixtures adjustable to comfortable working afterthoughts." It continues the old and tired linkage heights. If provided, cabinets and bases under mix of elderly and handicapped from earlier legislation center counters shall be removable. Door openers for and, particularly, the most significant fact is that it re- cabinets above counters shall be as close to the bot- quires that we build exclusively for the elderly, for tom of cabinet doors as possible. the handicapped, or for both in a given project. Other design features include: Surely this last is the only acceptable solution for Entrance: At least one primary entrance barrier-free, the handicapped elderly. This approach to housing a with access to an elevator. 32 inches clear door open- special group was developed 20 or more years ago to ing. Door sill flush with floor. If vestibule, 6 feet, 6 insure a housing stock designed and financed for ac- inches between doors. Adequate night illumination. ceptancy by a special group-in that case the elderly. Stairs: No protruding nosings. 7 inches maximum Therefore, at the outset of the national drive to pro- riser height. Handrails circular or oval, 13/4 inches to vide decent housing for people with handicaps, let us 2 inches thick. not be persuaded that the precedent of housing for Elevators: Install in all buildings of two or more the elderly should be our model. stories. Minimum cab size: 5 feet deep by 5 feet 6 inches wide. Doors to have safety edge with sensing The new approach is to insure that the laws and device. Control panel placed 4 feet from floor. Con- financing devices for housing provide equal oppor- trol buttons to have raised or notched information ad- tunities for choices in housing for everyone, including jacent to buttons. those with handicap. Corridors: 5 feet minimum. Basically, this is a matter of design. The U.S. De- Floors: Nonslip surface. Differences of level con- partment of Housing and Urban Development nected by ramps. 108 REHABILITATION LITERATURE SPECIAL ARTICLE These recommended standards are based upon the movement to expand housing options for persons research conducted under the HUD contract at Syra- with handicaps. The research conducted at Syracuse cuse University. Tasks were performed by approxi- includes estimates of costs to make buildings acces- mately 200 persons, including men and women in sible as well as of costs of renovating existing ones. It wheelchairs and on crutches, blind persons as well as must be recognized, of course, that labor, materials, hearing impaired. None of the recommended specifi- and inflation costs will be unique variables with which cations require a special design to accommodate only to cope on an individual basis. handicapped persons. This was also true in the origi- Preliminary studies conducted under the Standards nal standards and it has been well proven that space Project conclude that any increased costs resulting designed in this way is equally unusable by nondis- from incorporating barrier-free design into new con- abled persons. struction are small when related to total project costs, The availability of design standards based upon the averaging .48 percent. Renovation of existing build- concept of adaptability should herald the beginning of ings to meet these design features average 4.02 per- a new era, if community housing agencies, architects, cent for all buildings. designers, and builders are made aware of their exist- In addition to design specifications and cost data, ence. The stage is set by the NAHRO Project for the HUD Project will also establish basic criteria for community action to get housing going across the the selection of products to be used in living quarters country. as well as public buildings. The new standards are ex- When new housing is constructed and state or local pected to be proposed for approval by the American laws require that some percentage, say 5 percent, be National Standards Institute in the spring of 1977. designed for handicapped people, these designs will Approval must be given, first by a review committee be based on the adaptable principal. Whether or not a made up of approximately 75 representatives of in- percentage is mandated, we should now ask why it terested national organizations and then by the Board isn't 100 percent. Up until now only a handful of of the Standard Institute. Following approval, the housing options has been built for the handicapped. next step is to work for standardization of building Why not therefore reduce the balance until at least codes and design criteria based upon the official 10 percent of the entire housing supply becomes ANSI Standards. available for their use? It is justified by two things: The HEW-sponsored Project conducted by the The first is that, at the present rate of housing con- National Association of Housing and Redevelopment struction, it will take 10 years to reach the 10 percent Officials and the HUD-sponsored project conducted need point if all housing is made for adaptability over by Syracuse University reflect some new approaches that period. Second, there are builders and designers for attacking the housing needs of handicapped per- who will agree that making all units adaptable will sons. Most important, these projects will put practical cost less and present fewer levels of occupancy prob- resources into the hands of persons responsible for lems in the long run than if only a few special ones moving laws into action at the community level. This are built. bodes well for ultimately providing a wide range of The availability of cost data, also an aspect of the housing options for everybody, including persons new Standards Project, is another advancement in the with handicaps. Reprinted from REHABILITATION LITERATURE, April, 1977, Vol. 38, No. 4, pages 106-109. Published by the National Easter Seal Society for Crippled Children and Adults, 2023 W. Ogden Avenue, Chicago, Illinois 60612. Reprint no. A-200-21 Presentation on: The Principles of Service Delivery Mallep on the general theme: Barriers to Physically Disabled Sobruary 6.7, and 8. 1977 My Lanses Irn Plaza Author: Ms Jane J Strul Director : : Psychologics" Onta. is Crippied Children the 360 Rundey Road Tororto, interio. Canada No nation in the world, has proclaimed the concept of the equality of all human beings in such & way or to such an extent, than has my friendly neighbour, the United States of America. Declaring over 200 year ago that "all men are created equal", the value of equality of human beings became the very essence of the fabric of American society. As a Canadian, who was fortunate to do graduate study at an American University, I was taught the valuable lesson of the importance of history. Through the history of Black Americans, we have much to learn and much to apply in our deliberations today and tomorrow. In the beginning, as slaves, Black Americans were unequal to White Americans and were separated out from white living quarters. Thus the words unequal and separate would characterize the first phase OF the history of Black Americans. By 1865, almost 100 years after the Declaration of Independence, and with their freedom being declared, Black Americans became equal in the eyes of the law; but they remained socially unequal and separate. In the next century, and principally after World War II, Black Americans rejected their equal but separate legal status, and they re- jected their unequal and separate social status. Their Civil Rights Movement has achieved equality and integration for the most part in law, but there remains resistance to full social integration and equality in many of our communities today. Thus, we learn that the process of achieving social equality and integration for Black Americans, while not yet schieved, is: first, unequal and separate, second. equal and separate, and finally, equal and integrated, with the sucial rchievement always following the laws of the land. The population of people with physical disabilities is, like the Black American population, & heterogeneous minority group. In my view, people with physical disabilities, are in the first phase of their history towards achieving their civil rights. They are, for the most part, socially unequal and separate. Let us learn from the 200 year history of the struggle of Black Americans to achieve equality and integration. Let us resolve to eliminate the intermediate steps. Let us strive now and achieve immediately the opportunities for full equality and social integration of people with physical disabilities. One of the major barriers to integrating persons with physical disabilities into our communities is their dependence upon others for physical help in some of their daily living activities. A second burrier to community integration is that this needed physical assistance is most frequently and typically found in nursing homes; chronic care hospitals, homes for the aged, or other institutions separated but from the main- stream of community life. Thus, many "graduates" of rehabilitation programs may quickly begin lives of isolation and dependency even though individuals may possess good educational and vocational potential and have been equipped with skills and devices for self help. If the re- habilitation goal of active, productive living is to be achieved, and if we are to achieve an equal Quality of life for disabled people, then we must ensure their integration into the community through the availability of a range of accessible living accomodation, together with a broad range of supportive services such as attendant care and transportation, key elements in successful integration. With social equality and integration as our immediate targets, I now want to present two basic principles to act as the basis for all our deliberations, including the aspect of support services related to shelter or housing. The first of these is fairness or justice. What is a fair approach to support services? I submit to you that physically disabled people in need of physical support services want to and should pay for the ordinary costs of living. This is fair and just. I further submit that physically disabled people should not have to pay for any extra- ordinary costs of living occasioned by an inability to perform physical functions for themselves. To be burdened with extraordinary costs of living associated with physical disabilities would be unfair and unjust. As an illustration of what is ordinary and what is extraordinary, let us for a moment look at the "Case Study of Haid1" which is available to you. Heidi, now 28 years of age, has been a quadriplegic since she broke her neck in a diving accident 5 years ago. Dependent on her motorized wheelchair for mobility, she is nevertheless employed in a hospital earning $19,500.00 per year. Her major extraordinary costs of living are (See Appendix B) 1) Van transportation to and from work $ $2,640.00 2) Transportation for recreation - 324.00 3) Housekeeping and Meal Preparation - 4,080.00 4) Physical Care Services 1,200.00 The total of Heldi's extraordinary costs of living were $8,603.51, all of which was also taxable as earnings. Her ordinary or usual costs of living, contained in Appendix C HERE calculated at $5,668.15 per year. You will note from Appendix F lable 1, that Heidi had to earn $19,000 per year just to break even; she could not save any money; and she could take only one vacation per year, and that was restricted to the city in which she lived. Based on today's costs, Heidi would have to earn over $22,000.00 per year in Metropolitan Toronto, a municipality of over 2 1/8 million people, just to survive. A second feature under the principle of Justice, is that dis- abled people must have significant involvement in the planning and management of any enterprise concerning them. Planning with disabled people is fair, where with is the operational word. Aside from what is fair, planning for someone else is foolish and usually results in under or non-utilization as well as unhappiness and the misuse of finances. The third basic principle for our deliberations and planning is freedom - freedom to interact on en equal basis with one's fellow human beings, freedom to choose where to live and in what kind of accommodation on the same basis as any other citizen; freedom to take risks that involve one oneself; freedom to make one's own decisions; freedom to be responsible and accountable for one's actions and behaviour; freedom: to enjoy privacy and with the assurance that others will not betray matters of confidentiality, freedom from control by others, and freedom to assert and do for oneself as much as possible. I might better have said the principle of freedom within limits since each one of us has limits imposed on us in any culture for the protection and well being of all peoples as well as individuals. But, let the limits imposed be applied with equality and fairness for all. With DI.F targets of soc al equal social integration firmly in view, and with our basic painte pleas of justice and freedom as our means of achieving our objectives, weat is Dur task ahead? Obviously we must decide what we clean by supp. services related to housing. We should attempt to deliniate ben CENT support services and other kinds such as recreation and We should deal effectively with what are assential and essential support services, recognizing that non-essement support services might occasionally become essential because of circumstances. e.g. escort service for emergency Banking, look at the needs of staff for privacy, for duties and Me should take a fresh view of the training Treads of hide bound with the traditional visa of nursing on obvious Backgrounds of choice. But stove al all, the needs of the populations we are talking about first step. ECONOMICS OF SUPPORT SERVICES - One experience as a Demonstration Project for the Ontario Government. The Clarendon Foundation (Cheshire Homes) Ind. at 21a Vaughan Road, Teronto, Ontario, Canada, has been operating a Demonstration Project for 1½ years (see attached sheet) to prove that: (1) Many severely disabled people in need of physical support services associated with accessible accommodation of their choice, can live with a better quality of life and in good health, outside of institutional settings such as chronic care hospitals. (2) The delivery of essential and other physical support services on & 24 hour basis permits (a) choice of accommodation (b) integration within community life (c) gainful employment, training, and education (d) the Province of Ontario to assess the actual cests of these services separate from the ordinary costs of Bringisuch as tenants. food, shelter, and clothing which are paid for by the Our experience to date with maximum occupancy reveals that our average per diem cost for all support services is $19.52 per tenant based on 13 tenants. Comparing this to chronic care and extended care hospital costs, we learn that: (a) our costs (including food, shelter and clothing) are less than 50% of these institutions whose average per clem cost is about $55.00 per occupant; (b) the number of hours of care given to our tenants at least 15% more on an average than that given in such hospitals; and (c) our tenants are all enjoying productive lives ocavionally of their choice. socially, and recreationally in ordinary apartment living Our next step, the extension of support services on & wider basis, has already begun with no increase in costs. INFORMATION RE CLARENDON Question - What is the Clarendon Foundation and who do they serve? Answer - Clarendon Foundation (Cheshire Homes) Inc. is a non-profit Corporation which was established in 1974 for the purpose of providing accommodation and support services to severely handicapped adults who are either employed or in training to become employed. The Foundation is currently operating a pilot project in cooperation with the Ontario Housing Corporation and the Ministry of Community and Social Services at 21a Vaughan Road in downtown Cronto for a maximum of 13 tenants who are housed in 5 apartments plus communal dining and laundry facilities. All tenants require at Teast LNO of the support se cas offered which are personal care, meal preparation and serving laundry and housekeeping (light and heavy) in order to function day day as a student or employee in their chosen field. Support services are carried out by 2 staff of 6 fu -time attendants, 1 housekeeper, 1 part-time cleaner and ? part-tin Co-ordinator. Services are available on a 24 hour a day basis and are givenion the basis of physical inability to perform 8 function for oneself Eaci tenant signs a Service Contract with the Foundation outlining the cold the services. There are no fees charged to the tenant for thise services; however, tenants are required to pay all normal costs of living such as food, cleaning supplies, etc. The costs for these services are paid for by the Ontario Government. Through agreement with the Ontario Housing Corporation rent is geared to income and cannot exceed the market value of the pace occupied by any tenant. Each tenant has a one year sub- lease with the Foundation under the same general rules and regulations which are in effect in most apartment buildings in Toronto. interestion in 1:19 proful on Danger # maintain confident 1227. ACCIDE AND OVERSE C1 Chicago 2200 Heldi, SEOU 28 years of age, has been in quadriplagic sends the broke her, neck in 2: diving accident S years age. She is permanently confired at wheelchair which is motorized (Eost - $1,500.00) as she CARROT tish hereads IN a regular wheelchair. This docir 10 usually rul able that every conths = problem with the motor or electric wires develops which requires LIVE of EN electrician ($15.00), of & van to take the dealer :0 and from the repair shop ($12, (10) BILL extra house of duty Irm. has MEDICANE who MUST that accompany her et aughout the day : provide ler er force mobility ($15.00). Two 12-voi outsendes provide the for CSH wase's chair. Fornunately, chewe 15.3% aparkly relisol too in 2 DO 3 you partir ... when they need replacing, this represence LD. unexpected BECAUSE $35.30 Heidi has 2. university degree and 18 Employed in 3 hospited (019,,00.00 PET year salary). She chose LO accopt the hospital job at :: was 1: her apartment and to the Van Transper tation services she quirts =132 168 her wheelchair. The shorter distance between work and her pinn. C. was 2 definite factor in reducing the already highly the Van Transportation costs ($2,640.00) Heidi WRS cbliged to rent in 2. modern apartmone Unit required 3 recidence without stairs and steps RT with your the requires a love-in househloger 220.00) :- accivities such as nousekeup conts 33. quites & URA bedreon unit 50 affort WET IMea NO that one speciment difection reach 2.3 having the do 50 she could get over the door stall CBS the 1 housekleber 1.3 paid 20 help h 12: 2: up and CEO $ 200 in II. LD bad 21 night. She does househeeping and shipping ETTS providing breakfast and cooking SUPPLIER the has ESG 16: and 4:00 p.m. to herself as Heid: BRUE lunch 1. On the weukends, the housekesper to off and 3. st ($40.00 a weekend) Live-in Housekoeper's Salaties (for mid 3200 00 and $250.00 par month Alus TOOR and boa of Canada Kanpower Dec. 9. 1974 ("elephone) been calculated 200 $85.00 por month. 48101 pay her live.in househeeper for essing will barns 00 avoid the daily of 37.00 change by the is Firsts en scale fo. ENC. your ** Using Itntal figuies of $ 37.20 month to: 11.0 opposed 10 $200.00 a month Tents R CLE Page 3 Specializan nursing care is required from a registered DATEE twice : resk, As this visiting service only operates during regular working cours, Neidi must make up the two hours of working time she loses on Wednesday surnings in order to get this care. Buying clothes ($500.00) represents a major expense as nearly all of the clethes must go to is dressmaker for alterations for easter getting on and off ($100.00). Hairdressing is a necessity for Haidi as she cannot lean forward over a bathroom sink and only the hairdresser staks are ii 2 the right height to provide the backward reclining position which can accompridate her neck ($260.00). Generally speaking, Heidi has few problems with illness. To maintain her good health however, she must take the drug "Furidantin" daily the year round ($240.00). In addition, to reduce the spasm in her arms and legs, she must take "Valium" daily ($38.00). Drug bills are therefore high although she is covered by an Extended Health Care Plan which covers the cost each year after $50.00 deductible. Equipment costs, in addition to her motorized wheelchair, represent an exmense as she requires a menual lightweight adult wheelchair with removable arms ($362.00), as Hoyer lift ($392.00) and a bathtub clamp ($179.00) in order to utilize the lift dafely for transfers between wheelchair and bathtub. stat is covered by regular medical insurance ($51.13 a year) so CONTA attention is not 21 problem, although the 10% she must Day 62 the Sill 1: righer than the nome is she cannot get to the Tocal physical upstairs office and house calls must be made rather than office visits. Regular visits to a dentist ($25,00) are not within her Budden has to travel downtown in the whealchair Van ($12.00) in order to visit a dentist in & modern office building which has no stairs 07 other arce- itectural barriers. Heidi's grocery costs are not more excessive than anyone else who ASI in provide for two people ($1,920.00). However, she seldem can a ord :: intertain people for supper or a party ($50.00). Neither can she servit nerself the luxury of going to : movie or play, or even going to another person's house due to the transportation charge ($12.00), plus the cost D : the entertainment itself ($5.00). Household sundries, unusual expenses subscriptions, etc. also add to her already excessive expenses sed, 09 course, 162 have not even considered the initial cost outlay for fundshings ($2,000.00) Although Hetdi is permitted a $1,700.00 basic personal exempt on and is $1,006.00 disability deduction (1974), her income tax still MIS è major ($19,500.00). loss of income (54,905.00) due to Heidi $ relatively high annual schiry Considering all the expenses outlined above, daily 25 well as unexpected costs, it is nuite probable that Heidi will have no margin of financial security at the end of a year. Meidi, as a well educated, well motivated, ambitious woman, is much sendred within her community for her courage, determination and pleasant sitttudes in the face of such a permanent disability. What her neighbours should be admiring (but don't because they have no knowledge of it) is her courage in maintaining such 202 slender insecure hold on an overwhelmingly, costly, complex arrangement for independent living. Heidi must live with the ever lurking knowledge that it is only a slender thread of liappenstance which keeps her from the one a Iternate life-style available to such as she - i.e., confinement to an institution where she would be subjected to institutional rules and regulations, loss of privacy and freedom, :055 of employment and salary, and demoralizing dependence on the limited annual income ($876.00)* which disabled people are allowed to keep from provincial assistance in such circumstances. Instead of supporting herself and others through tax payments ($5,127.20), Heidi's care would be costing others not less than $6,351.00 per year** Heidi is, in fact, one of the few fortunate persons who have been able to mesh all her problems into a workable solution i.e. accommodition, COPE services, transportation, employment, etc.. If one part of this puzzle does not fit - she is then likely to require the services of a nursing name or extended care facility and her job is no longer possible, = The allowable costs set by the Province of Ontario are $11.00 per day ($4,015.00 per annum) for is residential care person and $15.00 per day ($5,475.00 per annum) for an extended care person in a 61 bed residence in Toronto providing some supportive care. (These allowable costs prevail in approved Nursing Homes as well.) ) Each single, disabled resident may receive family benefits assistance from the Province of either $225.00 (ambulatory allowance) or $238.77 (wheelchair user allowance) per month. Of these amounts, each resident contributes $5.75 per day for care, room and board and is thus allowed to keep $53.00 a month for his/her comfort. The meel- chair user is allowed to keep an additional $20.00 a month for transportation costs ($12.00 a return trip by van transportation). Thus, the total cost to the Province for some supportive assistance is between $4,651.00 and $6.35) 00 per year per resident. Heid:'s cost to the Province for there would -be $6,351.00 per annum in this residence or in a nursing home. Jr Heldi had DO stay in on extended care facility, the Province would pay an average of 537.90 per day, or $13,855.40 per year. "Ontario Hospital Compilation", published by the Ontario Hospital Associación and reporting for the period January to June, 1974, revealed that the median per diem cost for pat ent care was $37.96 for the 16 participation hospitals providing extended care facilities (the range was from $56.82 to $29.77 The reporting hospitals were classified as public, chronic, extended Co:e, convelescent and rehabilitation. OPENDLY R R. COSTS 07 PLASON RECAUSE (a) TRANSPORTATION - @ $12.00 per day return (i) To and irom Work @ 220 days $2,040.00 324.00 (ii) Social, Cultural, Religious, Recreational (baced on 1 outing every 2 weeks within Tozonto and 1 vacation each year in Teronto) * On December 9. 1974, the nost was 912.00 per return trip with the cost assured of rising to $14.00 by the end of the senth. The Toronto Transit Commission's Filot Project for 46 working handicapped in subsduled to begin Fabruary 5. 1975. $4,080.00 (h) HOUSENEEPTING AND MEAL PREPARATION (d) Live-in Housekeeper at $225.00 pex security $7,700.00 (11) Board for Housekceper @ $85.00 per means 1,020.00 (Mil) Difference in Cost between 2 bedroom 1 bedween spartment @ $30.00 DGE cooth 360.00 Live-in Bouseheeper Salary (for cooking and cleaning) Tanges between $200.00 and $250.00 per month, plus YOUR and heard (Source of Information: Miss Jossen. Canada Manpower, Telephone: 363-5931, Ext. 317, December ?. 1976). 200.00 (c) PHYSICAL CARE SERVICES (i.e., dressing, bothing @$9.00 & visit noteo a dog based on fees of Victorian Order of -Nurves, or $6,70.00 per year #lternative of persoading Housekceper for another S100 per month. $ (i) PAYMANCE PLAN @ $12.77 (Based on Onessive Hospital SEVERED UNDER THE EXTENDED HEALTH (a) CARE PLAN 6.126, IFY apartment, vental and hydro at $200.00 2,400.00 found 50.6 $20.00 per week and $20.00 per week during 3 week chard wachton) 1,370.00 Annual vacation and autordainment during year 300.00 (c) Troup Insurance EC $2.00 per week 204.00 who have at $8.56 per month (party Line) - varies depending - . . . . The cad for a push button phone with tpeaker applifier (s. Furtage for unforesean and Everyency Expenses (#t 5% of samel salery) 500.00 Universityment Insurance of $8,320.00 insurable income) 53.00 list aded Birlth Care Insurance for Company Groups a: $0.86 J.B. personath (hased on Onterio Blue Cross Plan) ( taxis Hospital Insurance Plan at $4.20 you 1001.00 (plue 25 LET with Lot Dovamage) 0.1 05.05.202 vot. (:) Indiduntal Expenses (Magnoines, writing supplies, soap, torthpasus, Morary memocrship, etc.) 100.00 32.033 COMPANATIVE COSTS OF 1-5 STUTIONS Pi YEAR PER PATIENT ING MOMES AMBULATORY PERSON WHEELCHAIR USER Room, Board and Care $4,927.501 $4,927.501 GAINS INCOME COST TO PROVINCE $ 696.00² $ 876.002 Total Public Assistance $5,623.50 $5,803.50 1. These figures are based on is maximum allowed per diem cost per patient of $13.50. There is no per diem ceiling under the Homes for Retarded Persons Act as opposed to the Homes for the Aged, The Charitable Institutions, or the Children's Institutions Acts. 2. Effective May 1. 1975, single recipients of GAINS will be paid $2,887.92 per year instead of $2,766.00 annually. The increase actually is paid to a Nursing Home leaving $696.00 per year for an ambulatory resident and $876.00 per year for a wheelchair user for "comfort" and "trans- poration". (Under the Guaranteed Annual Income System, a single recipient in a nursing home is allowed to keep $43.00 per month for comfort and & sonthly transportation allowance of $15.00 per month or $30.00 per month). ENTENDED CARN HOSPITALS LOWEST MEDIAN HIGHES? Room, Board and Care $10,866.05 $13,855.40 $20,739.30 3. Cost figures obtained from the Ontario Hospital Associations' "Ontario Hospital Compilations" publication reporting for the period January to June 1914. 1) 1. DEDUCTIONS : $31.20 (..) Contas Present Plan $ 331.71 (a) Persons Fried Crewink Unit $ 700.00 C. : $1.00 :. DESCRIBED 32,712.00 H [anic Patienal 111. Disability Deduction (condinal foll-tine 10 : J XIGHARDY COMPARATIVE INCOMES FOR HELP LIVING INDEPENDENTLY TABLE 1 1. Gross Income $10,000.00 $14,000.00 $17,000.00 $19,000.00 $19,500.00 2. Extraordinary Costs of Living 8,603.51 8,603.51 8,603.51 8,603.51 8,603.51 3. Effective Gross Income 1,396.49 5,396.49 8,396.49 10,396.49 10,896.49 4. Taxable Income 6,266.80 10,266.80 13,266.80 15,266.80 15,766.80 5. Total Income Tax Payable (1974 Rates) 1,485.60 2,757.60 3,889.20 4,685.70 A.905.00 5. Effective Net Income (after taxes) - 69.11 2,638.89 4,507.29 5,991.49 7. Ordinary Costs of Living 5,668.10 5,668.16 5,668.16 5,868.26 5,668.16 S. Surplus or Debt -5,737.22 -3,029.27 -1,160.87 42.63 323.33 Some Guiding Principles for the Manager of Housin for Handicapped Persons 1. Horo, canagement doss not know all the answers, most especially the design problems of elevators, entries, parking, and service processes, such as recreation and shopping. 2. Handicapped persons are whole persons who happen to be functioning under unusual circumstances, and therefore have special physical and emotional needs. 3. Functional capacity, not medical diagnosis, is he manager's key to analyzing adaptation of each person to the housing unit. 4. Therefore, adaptation to the unit must be individual, without presenception, and valid suggestions for that adaptation can come from any source, 5. Persons with one kind of handicap can often assist others with It different kino, 6. Handicapped persons often have special food proparation, bathing, therapy and exercise needs. 7. Housing is & key part, but only & part of 3 complex of movement and activity by handicapped persons. 8. Employment Eay be & critical element in continued residency for some, but this may require income waivers. 9. Handicapped persons need all the standard building and community services of subsidized and assisted housing, plus others deriving from individual handicaps. 10. Housing for handicapped persons should be viewed as an interesdiate step toward the true goal of full integration of the handicapped into all housing and the community at large. Such housing, therefore, any be seen 23 2. testing ground for integrated, accessible and usable housing everywhere, and information learned wust be promptly communicated to planning and building, architesture and Industrial design, governal and social research. Korton Louds- Feb. 3977 Attitudinal Barriers in Bavir mental Design for the Disabled "Normal people, attempting to emphatise with disabled people, make assumptions about how people with disabilities behave or ought to behave, which do not at all correspond with how they actually do behave. These assumptions are probably at least as prevalent among architects as they are anywhere else. Selwyn Goldsmith: Designing for the Disabled For the past eight years I have observed the environment, both animate and inanimate, from & lower vantage point in the wheelchair. I have observed it both as a human being, and as a design professional. I come to my work as an environmental designer for the disabled because I am trained as an architect and am myself & paraplegic. I am therefore daily sensitive to and conscious of how the environment presents itself to me, and how people react towards my existance in it. My professional specialization has been in the field of housing, be. cause 1 am drawn to this human shelter which forms a beafefoundations to which each individual relates, physically and psychologically, and which contributes such an important core to the sense of human belon- ging and worth. Y have therefore turned to the problem of housing for the disabled, and I have done so with strong feelings about what dis- abled people truly desire. The goals of the disabled are encompased in the principles of "normalization" and involve the will to freedom, equality, social integration and choice. Integrated My major experience in the implamentation of normalization is through a deconstration project of integrated housing for severely physically disabled persons. My associates and I. have been engaged in developing and coordinating resources which would allow quadriplegics to live in- dependently In the community, in individual subsidized apartment units in standard housing projects, with at-home support services when required. 2 Because our concept was, and still is, somewhat avant-garde in the Canadian context, we have had to cross many attitudinal barriers in discussing the functional feasibility, psychological desirability and economic validity of such a proposal. First we had to convince the many bureaucrats, planners and designers that even severely phy- sically disabled persons did not wish to or need to live in "special" environments particularly conceived for them, and that they were pre- pared to accept certain inconveniences, risks and uncertainties in order to enjoy a relatively "normal" life-style, according to their choice. Not only did we encounter great skepticism and fear on the parts of administrators and programmers, who tend to be over-cautious and over- protective, but we also encountered strong resistance from architects and designers. These people, from what little they knew of the topic, vere reluctant to accept the integrated concept, fearing that the TE- quirements for accommodating the physically disabled would involve undesirably specialized demands and result in excessive costs. The truth of the fact is that the objectives of "normalization" are quite the opposite. We have tried to domonstrate, and have had success in this, that physically disabled persons can live in independant housing units which are barrier-free, require at minimum of design modifications, and involve negligesble additional expense. Instead of relying on special built-in features, we emphasize the rolas of OC. cupational therapists and industrial designers to teach specific types of manouvers and/davelop simple adaptations and squipment which will increase individual functioning. This type of housing has the advantage that: 1) it can be provided anywhere; 2) it is well within the design scope of any architact; 3) it can accommodate the able-bodied with equal ease; 4. it in no way stignatizes the unit or its occupant; and 53 it emables the dis- abled LEDENE to learn to ada L to almost "normal" accommidations, So 3 that they develop coping mechanisms that enable them to function, as independantly as possible, in other barrier-free situations. These are all essential aspects of the normalizing process. So far we have found few short-condings in this type of approach, and we have noted an improved self-image of the residents because they are pleased that they are coping and living in a standard fashion. Their personal environment and independant life-style, whatever its accompanying problems and responsibilities, is building initiative to try more and to do better. The residents themselves are amazed st their growing strengths and abilities to manage physically, emo- tionally and financially. All are proud of their progress and achie- vements, and have a high self-esteem. We too are proud and happy with this demonstration, because it provi- des us with experimental ground on which to study various aspects of nurmalization. In our experience to-date, we have encountered quite a discrepancy between what the able bodied population, even that part working on behalf of the disabled, see as the optimam solution for the disabled, and what the disabled really aspire to for themselves. Normalization seems to have different parameters for the two groups, and it will be our goal for the future to reconcile them and find a happy medium. Parameters of "normalization" Many of the attitudinal barriers which we encounter smong architects designers 3TR based on pre-conceptions and lack of understanding about what disabled people cruly wast need, The most damaging and wide-spread in that disablec people save to, or prefer to, function, live 9 work, recreats, etc. in special environments that are specifi- cally designed to accommodate the handicapped, and that consequently are segregated, different, and spart from normal people and normal environments. This is a great myth! Disabled people cre not a breed apart! They are persons like everyone else, albeit with some physical limitations, but these can be accommodated in an uncomplicated fashion by the elimination of choughtlessly-built barriers, by promotion of good industrial design, and by developments of simple adaptive apparatus for severe situations. Uncertain of what a wheelchair really implies in terms of functi- oning, or what other physical limitations mean in terms of individual menouverability, designers tend to over-compensate in various exag- gerated and unnecessary ways. Often they over-design in terms of size and provide unreasonably large spaces or complex features where standard dimensions and equipment, properly applied, would have sufficed and been more desirable. Or designers become so engrossed with ergonomic elements of the physical aids and minouvers, that they design over-specialistd facilities that are oriented more to accorrodating the physical limitations than to catering to the human baing behind those limitations. Often, too, in order to in- create some aspect of safety on menouverability, availuents incor- porate more berriers and problems than they actually eliminate. Or they are so unsensitive to the disabled as living, feeling people, that in an effort to eliminate any mistakes they create anonymous, undefined and starile spaces which alienate and diminish human beings. Double-ended adantation The total life experience, for everyone, is the continual adaptation to and inducaction between EED and environment. Unrealistic perfor- marice standards and exaggerated design solutions develop attitudes which reinforce hurriers against the acceptance and intogration of the disabled minerity in the social milieu. Disabled persons are ge- nerally prepared to compremise and to adept to environments that are basically accessible and have DO gross functionality obstacles. The direction toward batrier-free environments: is the reasonable spprosch towards achieving such ends. 5 In order to make room for the physically disabled and to accommodate them comfortably side-by-side with the able bodied, society has to make primary and major modifications in its attitudes and values, along with secondary and minor modifications in the built environ- ment. It has to provide a greater opportunity to the disabled mino- rity to adapt and to give shape to the normal environment, $0 as to eliminate 2 divided society where individuals are expected to function only in spaces and in a manner assigned to them. Maybe the reluctance to embrace barrier-free design stems from the fact that somewhere in the back of their conscious, the able-bodied are willing to let the disabled advance only so far, and no further. Now is the time for myths about the disabled to be replaced by truth and reality. A personal physical limitation does require adaptive aids and occasional simple help to achieve effective functioning. However, over-compensation and excessive design criteria produce on atmosphere that is uncomfortable for everyone concerned. It builds barriers that interfere with the acceptance of thedisabled as valid and useful citizens, and it further restricts the personal ex- pression, human potential and self-actualization of individuals who are thus doubly deprived. Patricia Falta, B. Arch., M. Arch. Montreal, Quebec, Canada January 28, 1977 PROLOGUE "Some men see things as they are and ask why; I dream of things as they could be and ask why not." - Robert F. Kennedy WHY not? Why not integrated living? What is INTEGRATED LIVING? Simple. It is living in environments that are not segregated, separate, apart, restricted, different. For whom? For everybody. For you, me, young, old, black, white, rich, poor, able-bodied, DISABLED. Where?? EVERYWHERE. There where all the others live, in the housing they enjoy, in the neighbcurhoods they create. Whereever one BELONGS: Why??? Because this 10 an age of expanding wareness. Integration for all. Equality. First-class citizenship. LIBERATION. What is BO difficult about accepting the physically disabled in our midst? Seeing their as human beings like others, with similar aspirations, needs and ambitions, but with physical mancuverability problems and limitations? Other people have limitations, Albeit less obvious ones. Sometimes much more debilitating ones. Can we not stress the many similarities rather than the few differences? Can we not accomodate those extra physical needs in as natural a manner as possible? Do we have to focus on 8 whirelMair or other physical aid as the primary defining characterist of that being? "Make no assimptions!" a Sondra Diamond, psychologist Let ME be IDE. & person who 1.8 part of a family, wants to love, to help, to share, to contribute. Inside of my body, I the same buman being as you. Let me AMONG you. To work by your side, laugh and cry with you, stumble and succeed as you. do, to face the challenges of living. Living beside YOU. In your communities, your buildings, your homes. Why NOT? Why not change your attitudes to focus on the ABILITIES, not the dis-ability. "Don't do me no fevours... Don't t make my decisions for me, deprive the of my responsibilities, over-protect Me, pationize me. Don't imprison the real we in your fearful perception of me. Give me FREEDOMS such 82 you enjoy, and struggle with. Psychological freedom - to develop end express myself, to be stimulated, to be motivated. Social freedom - to be exposed to people and to activity, to choose my style, my way, Economic freedom - to be given opportunities, to work as you do, to be productive in- my way. Do you realize that I value INTERENDANCE as much as you do? "You are a child of the universe, no less that the two and the stars You have a right to be here. " Mar Elemann ALTERNATE HOUSING "Alternate" housing for physically disabled persons implies non-insi- tutional housing; housing that is "normalized", that is integrated both physically and socially into the regular housing-provision systems and structures, and which encourages its residents to inver- act with equal efforts and freedoms within the community. In Er: case of severely physically disabled persons, such housing must pro- vide accessibility, functionality and economic feasibility. When necessary, it must also be supplemented by adequate, permanent per- sonal help and by special-use equipment and technical aids where possible. Alternate housing includes living in private homes, in apartments, and in commines or cooperatives. The Quebec experience with alternate housing is in the field of spartment living. For more than two years Projet Normalide Lon has been functioning in Montreal, working to promote the condept of integrated housing and to implement the provisions of the disponents required for independant spartment living for young severel, physically disabled adults. To achieve these ends, Projet Normalisation has used the vehicle of a three-year demonstration project which has the support of the federal and provincial social welfare authorities. The efforts of the demonstration project are mainly comdinative. To the various agencies which are responsible for providing the housing and the service component in the province, the project pre- sents them with the immediate need of the disabled, and advocates that they expand the resources within the various existing resource delivery systems to include also the needs of physically handicapped persons. Projet Normalisation further helps the authorities to de. fine these needs and provide the appropriate resource allocation. 2 Such an approach has proven successful in opening doors for negoti- ations for two reasons. First, because as a pilot demonstration pro- ject it does not directly threaten to disrupt the existing delivery systems, and does not demand a total initial commitment-to-the-cause on the part of those who are willing to cooperate with US. It offers $ trial and error method, open to changes and modifications along the way, and can even encompass failure and rejection. Second, the project gains a certain status because it is couched in the methods of a pseudo-scientife research program: it is thoroughly documented along each step of the way, closely monitored by the fede- ral and provincial governments, and professionally evaluated as to efforts, efficiencies and effects. Since It is 8 demonstration project, the principles and practicali- ties of integration in terms of independant apartment living can be gradually and comprehensively explored as a pilot experience. The many individuals and agencies involved are continually assessing feed- back, both as to method and result, and there is constant review and evaluation of what has been accomplished before a further step is proposed. The project has now been more than two years in progress, and has given concrete results which provide positive feedback and form real precedents on which to develop future work. As a sequence to the ini- tial stage, the majority of the agencies with which we have collabora- ted no longer regard the project as a "demonatration", They have convinced themselves that the objectives which we had set forth are feasible and desirable, and they have adopted policies and budgets to include the requirements of integrated housing within their man- dates. Thus the pilot project has offered an acceptable means to ex... periment withhew approaches, and editing systems are now being perma- nently adapted to include the needs of physically disabled persons. 3 One of the objectives of Projet Normalisation specifically stipulated that young quadraplegic adults should be integrated in independant apartments, and many of them are presently living on their own. Their apartments are mainly located in social housing projects which are rented at a rent geared to income scale. The initial furnishings for the residents have been paid by the Social Affairs Department, and the personal services, as individually necessitated, are provided on 2. home-visit basis and fully subsidized by Social Affairs. Each of the individuals are happy and proud to be on their own, "chez my" as they say. They ask for various amounts of personal services, from none at all to a fair amount, but in addition to this type of formal" help, they depend on other social contacts which they have made and which give them a great sense of personhood - and we BYG happy for it! The majority of the units that have so Ear been handicap -modified are located in Senior Citizens' housing. We had feered that Teaching young disabled adults into such on environment would be only partint- iy integrative, and therefore only semi-normulizing, but the expert- ence to date seems to erase that fear. The unjority of the disabled inhabitants have arranged active lives of their own, and therefore are not deeply conscious of their surrounding neighbours. Thus they are very little affected by the fact the senior citizen residents have different socio-psychological attitudes and needs than their own. The young residents sre mainly satisifed with the buildings and apartments as such, and their sense of having $ normal life-style is not at all diminished. The modified units and in highwrise brildings of six to mine loors each, one modified apartment per floor. This arrangement WOLLS well, both in terms of design layour as wall as of dispersal of the disabled throughout the building. the problem of fire sefery has been brought up often: The operative response is that the birlding administrators and the disabled tenants work in close cooperation with the Elits 111. 4 partments, which all keep on file in what buildings and on what floors disabled persons live, whether they are elderly or young adu t tenants. In addition, special fire department "invalid" decals are placed in the window of each handicap unit for easy identification, so that in case of fire emergency the firemen would rescue the tenants there first. The local municipal housing planners, architects and adminis trators are not unduly worried about fire safety, because they feel issured that their buildings are increasingly more fire-proof, for batter safety of all tenants. In case of emergency, they prefer that all tenants use the balconies as escape Locations to get out of alle smoke. In the handicsp units, the balconies are made wheelchair-accessible, and smoke detectors are installed in all apartments. As regards other modifications in the handicap-sdapted units, We have asked for only slight changes and additions, for EWO reasons. First, It is easier to convince the architects and administrator: that if only minor changes are necessary, this implies little idditional work and minimal extra cast. It is easier for the authorities to ac- cept our basic request and it alleviates their fears that they will commit themselves to creating "special facilities" and undesirably different apartments which would be inconvenient for the able-bodied, if such were the need. Basically, therefore, the request in only for simple removal of accessibility and functionality barriers. These constitute minimal design criteria which are well within the scope of every erchitect and which contribute a negligeable cost increment. Second, WE try to encourage the disabled tenants to adapt to en al- most "normal" apartment unit, so that they will develop coping mecha- nisms that will enable them to function, as independantly as possible, in other standard accomuodation situations. This forms an important part of the normalizing process. Instead of relying on spec' 11 built-in features, we emphasize the help of an occupational thera- pist to develop simple adaptations and teach specific types E ma- nouvers to increase individual functioning. So far, WE have found no major short-comings in this type of approach, and we have noted an improved self-inage of the residents because they are pleased that they are living and coping in a stand rd fa- shion. They are also finding that they gradually come to d more and more for themselves, and are amazed by their own increased abilities and strengths. Though originally many feared the espon- sibility of having to deal with financial independance and it: pro- blems, they are all managing well, whether they receive study grants, welfare, salaries or other income. All are proud of their ac Leve- ments and life-style, and as a result they have B high self-e teem. In the orientation of the demonstration project, Projet. Norms sation has continually resisted the desire to satisfy, in & band-nid Teshion, the immediate needs of the disabled population because it is our be- lief that "special" housing solutions are too often only one-shot deals and provide only short-term relief. In its stead, the objectives of Projet Normalisation his ve been to implant long-term, government supported solutions to the housing and service needs of the disabled, 50 that 8 natural availability of these resources will be assuredin the future for all who require them. These kind of objectives demand & more difficult and time consuming process, because they require the esopuration of the many additional which have jurisdictionovez the mary different I2 juirements make up "incograted housing". He do DCC secopt that the representatives of the public sector ignore their responsibilities VIS à the disabled portion of the total population which they are mandated to serve. 6 But in conclusion, it is important again to focus attention on the disabled individuals themselves. The success of Projet Normalisation is its emphasis in stressing that the creation of integrated housing resources puts the responsibility of living on the individuals them- selves. It is up to them to utilize those measures which have been provided for their use. This method of helping disabled persons help themselves must be the ultimate goal of all those who are truly working on behalf of the disabled population. Patricia Falta, M. Arch. Environmental Designer January 10, 1977